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Building the evidence: developing the winning principles for children and young people

Building the evidence: developing the winning principles for children and young people



Building the evidence: developing the winning principles for children and young people is the latest publication from the Children and Young People Survivorship team and was launched at the fourth ...

Building the evidence: developing the winning principles for children and young people is the latest publication from the Children and Young People Survivorship team and was launched at the fourth national test community workshop. (Published September 2010).



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    Building the evidence: developing the winning principles for children and young people Building the evidence: developing the winning principles for children and young people Presentation Transcript

    • NHSCANCER NHS Improvement National Cancer Survivorship InitiativeDIAGNOSTICS Building the evidence: Developing the winning principles for children and young peopleHEART Children and Young People Cancer Survivorship September 2010LUNGSTROKE
    • ContentsForeword 3 Cross-cutting themes – an overview so far: 50Introduction 5 1. Equality 50 2. Evaluation summary 51Children and young people long-term follow-up care 8 3. Evidence review 52pathways and definitions of potential levels of care 4. Identifying core competencies required by nurses 54 5. Lost to follow-up (Birmingham and Andy Toogood) 54Alignment to the NICE Children and Young People 13 6. Pan Thames shared care long-term follow-up (Gill Levitt) 60Improving Outcomes Guidance 7. The non-clinical policy project work (CLIC Sargent) 61The patient perspective and how patients 14 What are the challenges and barriers to implementation? 65and their carers have been involved Recommendations to commissioners, 66The latest evidence from our children and young people 15 and alignment to QIPP(P)test sites along the key stages of the patient pathway: The next steps beyond September 2010 67Care coordinator function 16Treatment summary and care planning 18 Signposting to additional information 69Risk assessment – including psychosocial assessment 22 and key contact detailsIT system populated 27Patient and parent education and psychosocial support 33 Acknowledgements 70Continuation of aftercare/models of care 38Continuing sections of the pathway 43 Contact details 71Transition 44
    • Building the evidence: Developing the winning principles for children and young people 3ForewordThis is the second evidence publication from the This publication draws together the different Further support for the survivorship initiative wasChildren and Young People (CYP) workstream, as strands of work that are nearing completion to the early recognition in the NICE CYP Improvingpart of the National Cancer Survivorship Initiative provide a basis on which to design functional Outcomes Guidance document (2005), of the(NCSI). It represents the sustained hard work models of care that deliver on the five domains importance of aftercare. This document detailsinvested by all of our CYP test sites in working in the DH consultative document ‘Liberating the set standards to ensure an improved service istowards improving the health and wellbeing of NHS: Transparency in outcomes – a framework provided, and that includes the need for a leadsurvivors of cancer. The first publication was a for the NHS’ (July 2010). These domains are: in late effects for each Principal Treatmentshowcase of the varied work programmes Centre, to drive the necessary measures equallysupporting the NCSI vision, and addressed the Domain 1 across the country.five key shifts: Preventing people from dying prematurely A world-class service at each stage of the cancer1. A cultural shift in the approach to care; Domain 2 journey - regardless of where people live - was Enhancing quality of life for people with emphasised in The Cancer Reform Strategy (DH2. A shift towards holistic assessment; long-term conditions 2007). However, we know that inequalities already exist, in relation to access to services and3. A shift towards support for self- Domain 3 treatment, patient experience and outcomes (DH management; Helping people to recover from episodes of 2010). A further aim in this survivorship initiative ill health, or following injury will be to produce a model of care that provides4. A shift from a single model of clinical equity in terms of, for example, access to follow- follow-up to tailored support; Domain 4 up care, access to psychological support, and Ensuring people have a positive experience support with returning to education5. A shift to an emphasis on measuring of care /employment. experience and outcomes rather than clinical activity. Domain 5 Treating and caring for people in a safeSource: the Department of Health (DH) Vision environment and protecting them fromDocument (December 2010). unavoidable harm
    • 4 Building the evidence: Developing the winning principles for children and young people With regard to the evidence already available – it Both the CYP and adult work streams have This has been an exciting time, helping to shape is clear that large epidemiological studies, embraced the chronic disease model of different and develop services for survivors. The next supported by clinical studies, inform us of the levels of care, ranging from self-management, stage will be testing across whole pathways of needs of the survivor population. The NCSI work guided care to complex specialist care – all care, and ultimately the implementation of has been multifocal, appreciating that for some importantly with the ability to re-enter the effective aftercare utilising the evidence survivors, the journey does not stop after the services as necessary. produced by the test sites over the last two acute treatment stage – when cure has been years. We look forward to discussing and achieved – but is often the start of many years of There are a number of cross-cutting strands of shaping our shared vision of survivorship care continuous aftercare. Some patients may work that support the delivery of the NCSI CYP with you, both during - and after - the develop long-term chronic conditions as a result workstream; for example, these include: September workshop. of the cancer and the treatment they have addressing workforce competencies; skill-mix; received. training and staffing resources issues to be able Faith Gibson to cost-effectively deliver services in the future; Clinical Professor of Children and Taking the issue of long-term conditions as a very the agreement of core patient pathways to Young Peoples Cancer Care significant issue for some cancer survivors, one ensure a consistent approach to care; and Great Ormond Street Hospital of our aims within the CYP survivorship different models of care that are personalised to for Children NHS Trust and London South workstream has included testing ways of the needs of survivors and their families. Bank University improving the outcomes for those patients with long-term chronic conditions. Our challenge is The CYP workstream has worked with the adult Gill Levitt to provide personalised coordinated care that is survivorship workstream to ensure there is a Consultant in Oncology and Late Effects appropriate across all age groups, that continuity of approach across the patient Great Ormond Street Hospital encourages flexible, informed self-management, pathway, in particular in relation to the different for Children NHS Trust and represents a continuum throughout the stages of transition and the need to proactively survivor’s journey. Equally challenging, the manage effective and informed transition. service must be sustainable and affordable to commissioners in the future. References Department of Health (2007) Cancer Reform Strategy. Department of Health, London. Department of Health (2010) National Cancer Survivorship Initiative Vision. Department of Health, London. Department of Health (2010) Reducing cancer inequality: evidence, progress and making it happen. Department of Health, London. Department of Health (2010) Equity and excellence: liberating the NHS. Department of Health, London. National Institute for Health and Clinical Excellence (2005) Improving outcomes in children and young people with cancer. NICE, London. www.nice.org.uk
    • Building the evidence: Developing the winning principles for children and young people 5IntroductionThere are approximately 40,000 of the population In the wider economic context, it is important towho have had cancer as a child or a young person ensure a survivor of a childhood cancer is able towho will need some level of care and long-term fulfil a role in society and contribute to thefollow-up as they live into adulthood, perhaps 50+ economy by being able to work and lead ayears after their cancer diagnosis. normal life.The following table shows a ‘snapshot’ of thestatistics: Societal impact of cancer for children and teenagers and young adults, as judged by the life years at risk to 70 years. UK incidence figures for 2005. 40,000+ survivors of cancer Childhood cancer Teenagers and young Cancer in children and (0-12 years) adults (13-24 years) young people (0-24 years) Cancer accounts for 20% of deaths in children between 1 and 14 years of age Male/Female: Male/Female: Male/Female: 725/589; 1.23:1 1077/992; 1.09:1 1802/1581; 1.14:1 5-year survival rate for 78% of children Years at risk/case: 62.6 Years at risk/case: 46.55 Years at risk/case: 52.8 Children and young people surviving cancer may live for 50+ years after Total years at risk: 82,310 Total years at risk: 96,303 Total years at risk: cancer. 178,613 each year Stiller and Walker 2009 (personal communication)
    • 6 Building the evidence: Developing the winning principles for children and young people • Preliminary estimates show that life years at stake for patients diagnosed under 24 years Estimated numbers of five-year survivors of all childhood cancers combined alive at the rank only second to breast cancer end of successive calendar years, by attained age in years. Great Britain, 1971-2005 • This means that developing cancer during early life accounts for the second largest cohort of cancer survivors in society • This places the rare status of young people’s cancer in a different context, as this statistic applies to a group of patients usually considered to represent no more than 3-4% of all cancer patients. In the current economic environment, the pressure on public sector services to be as competitive, efficient and cost-effective as possible and, most importantly, the need for services to be as responsive to the individual needs of cancer survivors from the children and young person group means that we have to look more imaginatively at providing care for cancer survivors in the future. Of course, there are challenges in doing so, including the fact that these patients are generally a transient population as they grow into adulthood Modified from C Stiller, Childhood Cancer in Britain: Incidence, Survival, Mortality, OUP, 2007 and move to other parts of the country, for example. Therefore, there need to be systems and mechanisms in place to ensure that this group of During the past twelve months or so, our Children We have worked with our test sites, our patient patients can access services. The Birmingham team and Young People test sites have worked as part of representatives, our National Clinical Leads and our and Dr Andy Toogood (Service Lead for the NCSI to explore different ways to improve National Children and Young People Steering Endocrinology and Consultant Endocrinologist) services to help to identify a holistic service model Group to bring together the evidence from their have looked into the issue of ‘lost to follow-up’ and with the key components to inform commissioners work as part of this survivorship initiative. the results can be seen on page 54 of this in their decision-making process in the publication. commissioning of long-term follow-up pathways.
    • Building the evidence: Developing the winning principles for children and young people 7In doing so, we are very conscious of the changing The CYP Survivorship initiative is aligned to the Acknowledgementsstructure and environment of the wider NHS and NICE CYP Improving Outcomes guidance (2005) - Dr Charles Stillerhave endeavoured to take account of the core further details can be found on page 13. Childhood Cancer Research Groupprinciples, for example: Department of Paediatrics From the learning and evidence we have distilled a University of Oxford• Personalised care number of key principles that form the basis of a• Quality holistic service model so that this work can progress Professor David A Walker• Innovation to shape future services for CYP cancer survivors in Paediatric Oncology, Queens Medical Centre• Productivity a very practical and tangible way. University of Nottingham• Prevention• Patient involvement. These key principles can be summarised as follows: Patricia Morris NHS ImprovementTo capture the learning and evidence, we have 1. Introduction of care plans and treatment Director, Cancerproduced this short publication which is the second summariesin a series to support the National Cancer 2. An emphasis on individualised care for all Judi TappSurvivorship Initiative (NCSI). CYP cancer survivors National Improvement Lead 3. Alternative continuous aftercare rather CYP Cancer SurvivorshipThis second publication presents the findings, than the traditional models of carelearning and the latest evidence we have gathered 4. Planned and informed transitionfrom our initial ten Children and Young People test 5. Safe, informed self-managementsites following twelve months of testing. 6. Better use of technology to meet the needs of individual patients.We have also included the learning and evidencefrom our cross-cutting themes, and most A matrix of the recommendations to commissionersimportantly the patient perspective throughout as is shown on page 66 of this publication.an integral part of helping to develop and shapethe principles that will provide the personalised careand models of long-term follow-up in the future.
    • 8 Building the evidence: Developing the winning principles for children and young people Children and young people long-term follow-up care pathways Introduction The development of patient pathways provides a basis for equitable good quality care, and in addition enables a transparent model of care for commissioners. Survivorship starts at the point of diagnosis, but the journey at this point is more likely to be dictated by treatment protocols or guidelines, including the surveillance for relapse. The pathways below depict a survivor’s journey from the point at which they enter ‘permanent survivorship’, i.e. the time when relapse from their primary tumour is unlikely. It is appreciated that for some very complex patients non oncology specialists will be bought into the pathway at an earlier point. The timing of entry to aftercare, therefore, may need to be flexible. The following pathways are currently under consultation, and have yet to be finalised. The HUB relates to the principle treatment centre working in conjunction with the shared care facilities.
    • Building the evidence: Developing the winning principles for children and young people 9 Paediatric continuation of care pathway Care coordinator contact located at HUB Entry into Risk assessment including Patient and parent Rapid re-entry permanent long-term psychosocial assessment education and at any point Test and review care continuation follow-up and psychosocial along the Outpatients Treatment of after care care planning support pathway Department Refer to palliative care team Follow-up and Diagnostic Aftercare review of care planand treatment MDT MDT MDT Review Care plan Treatment Clinical Nurse Summary Referral to Level 3 review Specialist Care Plan Specialist and MDT Clinic Endrocrinologist, Cardiologist Consultant Assisted reproductive There is flexibility with age range specialist (if age of transition appropriate) etc. There is flexibility to transfer IT system Shared care through levels of care on the populated local hospital pathways The pathway is followed in conjunction with agreed paediatric Transition at 16-18 years to young adult service Transition at 24-25 years to adult service protocols and guidelines
    • 10 Building the evidence: Developing the winning principles for children and young people Teenage and young adult continuation of care pathway Level 1 and 2: Supported self-management and planned coordinated care pathways Care coordinator contact located at HUB Entry into permanent long Risk assessment Patient Automated Rapid re-entry -term follow-up including psychosocial education and surveillance at any point Test and review Continuation assessment follow up psychosocial system by along the Outpatients Treatment of after care and care planning support HUB PCT pathway Department Refer to palliative care team Follow-up and Diagnostic Aftercare review of care plan and treatment MDT MDT Survivorship MDT programmes Review GP (>18) Care plan Transfer to review level 1, 2, or 3 pathway Treatment Consultant Long-term Summary (level 2 Referral to level 3 management Specialist and MDT Care Plan only) of medication clinic e.g. Cardiac Exercise and follow-up Endrocrinology, programmes Clinical tests Assisted reproductive Nurse specialist etc. IT system Specialist populated Shared care local hospital Level 2 Planned coordinated care There is flexibility with age range of transition Telephone follow-up Both level 1 and 2 There is flexibility to transfer through Supported self management levels of care on the pathways and planned coordinated care Transition at 16-18 years to young adult service Transition at 24-25 years to adult service
    • Building the evidence: Developing the winning principles for children and young people 11Teenage and young adult continuation of care pathwayLevel 3: Complex care pathway Care coordinator contact located at HUB Entry into permanent Risk assessment Rapid re-entry long-term care including psychosocial Follow-up at any point Test and review Continuation assessment follow up and review along the Outpatients Treatment of after care and care planning - Consultant pathway Department Refer to palliative care team Diagnostic Aftercare and treatment MDT MDT Patient information MDT and psychosocial Review Care plan support review Treatment Record and Care Plan Survivorship Summary Referral to level 3 Transfer to programmes Specialist and MDT level 1 or 2 clinic e.g. Cardiac pathway Endrocrinology, IT system Assisted populated reproductive Exercise specialist etc. programmes There is flexibility with age range of transition There is flexibility to transfer through levels of care on the pathways Transition at 16-18 years to young adult service Transition at 24-25 years to adult service
    • 12 Building the evidence: Developing the winning principles for children and young people Definition of potential levels of care This is in alignment with adult levels of care. Characteristics may include: Self Care Model • No routine outpatient attendances • Stable disease pattern • After treatment with curative intent • Information ‘prescription’ and/or an educational intervention • Automated surveillance tests with results by post or phone • Ability to re access system with/without reference to GP. Planned Coordinated Care Model • Planned review of care e.g. hospital, community, face-to-face or telephone • Clinical examination • Clinical or individual risks identified (disease, treatment, person) making patient unsuitable for supported self-management • Multi professional input required • Patients with significant co-morbidities • Those who are unable to self manage • Patients with salvage options. Complex Care Model • Complex rapidly changing health • Rare complex tumours • Complex treatment complications or symptomatic needs • Complex ongoing treatment regimes • Other input required e.g. Cardiology, Haematology, Endocrinology • Requiring regular MDT reviews • Acute exacerbations • Metastatic patients.
    • Building the evidence: Developing the winning principles for children and young people 13Alignment to the NICE Children and Young People ImprovingOutcomes Guidance (2005)In addition to the CYP NCSI, children and young The National Cancer Information Network haspeople’s work streams are progressing, led by the established a CYP Clinical Reference Group. One ofNational Cancer Action Team (NCAT) across the its early tasks has been to agree the national cancerNational Cancer Programme to deliver the Cancer dataset for CYP, into which the CYP NCSI groupReform Strategy (2007). There are significant has had input to ensure survivorship/late effectsalignments and synergies between these work issues are included.programmes that impact upon, and can supportdelivery of, the survivorship agenda for children and The NCAT Patient Information Programme isyoung people. working with clinical teams and cancer charities to develop information pathways across the CYP ageFor example, to implement NICE CYP Improving range throughout diagnosis, treatment andOutcomes Guidance (2005), commissioners of beyond. This will provide children and youngspecialised services and Cancer Networks have people and their families with access to informationagreed the configuration of CYP cancer services to about clinical and non-clinical aspects of cancerdeliver care throughout the cancer pathway. The care that meets agreed quality criteria.CYPIOG, and the resulting measures for peerreview, have driven the formalised establishment of AcknowledgementCYP Late Effects MDTs with defined clinical lead, Louise Hookermembership and remit, including the development Project Manager, Children and Young Peoplesof patient treatment summaries and plans for Improving Outcomes Guidance Implementationholistic care after cancer treatment. National Cancer Action Team Member of National CYP Steering GroupIn response to the recommendations of the louise.hooker@ncat.nhs.ukCYPIOG, CLIC Sargent has (with the endorsementof the CYPIOG Advisory Group) undertaken a wide-ranging review of out of hospital care ( known as‘More Than My Illness), and has proposed a modelof community care which reflects many of the keythemes identified in the CYP NCSI. This work is References Department of Health (2007) Cancer Reform Strategy. Department of Health, London.now moving into field-testing and evaluation National Institute for Health and Clinical Excellence (2005) Improving outcomes in children and young people with cancer.phase, with the support of NCAT. NICE, London. www.nice.org.uk
    • 14 Building the evidence: Developing the winning principles for children and young people The patient perspective, and how patients and their carers have been involved Introduction 2. Participation will also uphold young people’s Two further elements of work yet to be reported, There is an expectation for young people and rights and fulfil legal responsibilities. that will feature as a poster at the workshop in families in our care that participation, in some form 3. Young people will be heard and involved in September are the findings from the Papworth or another, will be a feature of their care pathway. shaping and evaluating services that affect study ‘Evaluation of NCSI Service User Involvement Being involved in treatment decisions and decisions them. Model’ where the experiences of young people on that affect their care is not new; this level of the workstream steering group will be featured, participation is a feature of everyday clinical care. In addition to active involvement in test site activity, and evidence/comments from the patient What appears to be more of a challenge is the capturing the patient experience to inform the representatives regarding evidence to date. participation of children, young people and their model of care has been an important feature of all families in service evaluation and service of our work. Through focus groups, questionnaires This is work in progress, but we can be confident development. Meaningful involvement that is and individual interviews, those who are leading that the patient and family voice is ever present in effective and brings about change that is lasting is test site work have engaged with those who are our work. less than straightforward. However, there is now a receiving care. solid policy infrastructure for supporting consulting This summary has been provided by the CYP with children and young people and encouraging One of the roles of the evaluation project team is to Evaluation Team, led by Professor Faith Gibson. decisions and choice informed by this consultation ensure we have captured the patient voice and are (DH 2002, 2003a,b, 2004, 2010). able to tell a complete story across test site work. Monthly reports have been incredibly helpful here, References Throughout the CYP workstream children, young and we have been able to extract stories from 1. Department of Health (2002) Listening, hearing and responding: Department of Health Action Plan, core people and their families have played a significant patients and include these where appropriate principles for the involvement of children and young role, in both shaping and directing the focus of throughout this document. Through immersion in people. Department of Health, London. activities in a number of ways, both at the local test sites reports, we have been able to extract 2. Department of Health (2003) Strengthening accountability. level on test site steering groups and more some common themes around the patient Involving patients and the public. Policy guidance section strategically on the CYP national steering group. experience that relate to information needs, 11 of the Health and Social Care Act 2001. London, p1-16. Through this involvement we anticipate achieving a education, transition, and relationships with 3. Department of Health (2003b) Listening, hearing and number of important outcomes: professionals. We have used quotes where possible, responding: Department of Health Action Plan. and in addition are beginning to shape a further Department of Health, London. 1. Young people’s participation will lead to piece of work to be led by the evaluation team that 4. Department of Health (2004) Patient and Public improved and more appropriate services, will seek to fill any emerging gaps around the Involvement in Health: the evidence for policy improved decision-making, better use of health patient experience (see cross cutting themes on implementation. Department of Health, London. 5. Department of Health (2010) Equity and Excellence: services, and increased empowerment to pages 50-64). Liberating the NHS. Department of Health, London. manage their own health.
    • Building the evidence: Developing the winning principles for children and young people 15The latest evidence from our children and young people test sites alongthe key stages of the patient pathwayIntroductionThe evidence represented in this section has beenextracted from the wealth of information from ourCYP test sites. The evidence has been aligned tothe QIPP(P) agenda as follows:• Quality• Innovation• Productivity• Prevention• Personalised patient care and involvement
    • 16 Building the evidence: Developing the winning principles for children and young people Care coordinator function Care coordinator (key worker) Key learning points The project aimed to assess the range of enquiries made by cancer survivors into The work was to assess the needs of the survivors in relation to key worker support the long-term follow-up unit (LTFU) at Great Ormond Street Hospital for Children and then to explore and implement alternative methodology in routine long-term NHS Trust (GOSH), and how a key worker role could support and address these. follow-up care that could address this need. The role of a key worker can support The project would review the current practice in addressing these enquiries, survivors and parents on issues whilst under LTFU care. identify the most appropriate person to fulfil the role of a key worker in the unit, and also explore supplementary support to survivors. The main focus was on Evidence service design and improving communications, incorporating new technology, An Access database was created to log enquiries from individual callers. The protocols and innovative ideas into clinical practice, for the benefit of the survivors database was placed on a shared drive, accessible to all working in the LTFU and and their family. related haematology and oncology services that are known to receive such enquiries. The calls were logged in the system by each recipient, even when they Patient perspective were passed from first recipient to other members of the LTFU team. ‘Sometimes I feel so anxious and worried but I don’t want to Analysis of the database provided the baseline evidence of: bother my doctor about it. Having a key worker would be • The number of calls into the LTFU service and the number of enquiry episodes wonderful….. knowing exactly who to contact whatever the • The nature of enquiries, their flow within the LTFU and the response and problem and always being able to get advice and information resolutions when needed.’ • The need for a key worker role unique to LTFU team at GOSH • The need for a distributive resource used in receiving the enquiries and passing to the appropriate person.
    • Building the evidence: Developing the winning principles for children and young people 17Approximately 40% of the enquiries are related to LTFU appointments, e.g. for Impact of the improvementchanges or confirmations. These are most appropriately dealt with by LTFU ‘The pathways for long-term survivors are becoming increasinglyadministrator. Whilst the administrator receives approximately 66% of these clear. A combination of a designated key worker, a wellenquiries directly, another 34% of them have to be redirected to the administratorby other recipients. Analysis of the audit also showed that considerable resource constructed website for contact details and information, and antime was spent on transferring enquiries to the right person who can resolve them. accurate treatment summary and care plan should improve theEvidence collected through the project aligns with the QIPP(P) parameters. quality of the survivor experience beyond recognition.’Particular points of interest Healthcare professional perspectiveFollowing analysis of the enquiries into LTFU, the following improvements andinnovations have been made: • Following issue of central contact details and the appointment of the LTFU• The LTFU administrator has been appointed as key worker to the survivor, which administrator as key worker, there is a shift to more enquiries being directed to is unique to GOSH the key worker and a simultaneous drop in enquiries to other groups. The• Design of a LTFU contact card for distribution to survivors, so that future secretary group has shown a small increase because there were, at the time of enquiries are made centrally, but also providing useful web links. This card the second audit, patients with serious life-threatening problems whose enquiries has been designed by a patient representative on the GOSH steering group - were directed to a particular haematology secretary for urgent attention of one of Oliver Garner the clinicians. The relatively short length of the second audit may also have• Creation of a LTFU website that can address commonly asked enquires and can contributed to this finding provide more information and links on living with and beyond cancer. This has • Continuing development of the contact card and expansion of the website with been developed with the helpful input from Oliver Nash, also a patient emphasis on further useful and informative links. representative on the steering group• Access to the LTFU service is made easier with a central point of contact to the Acknowledgements key worker. Survivors are able to access general and specialised information from Alison Leiper the local website. Associate Specialist in Haematology Great Ormond Street Hospital for Children NHS Trust Whilst awaiting full development of leipea@gosh.nhs.uk the contact card, letters informing central contact details of the LTFU Gill Levitt service and the key worker have Consultant in Oncology and Late Effects been issued to the survivors or their Great Ormond Street Hospital for Children NHS Trust guardians. 350 letters were levitg@gosh.nhs.uk distributed during the period January to July 2010. For help with the analysis: Ramesh Modasia Following implementation of the Service Improvement Facilitator changes, a second audit of the ramesh.modasia@islingtonpct.nhs.uk enquiries into LTFU for a two monthperiod (June to July 2010) was conducted. This was done to evaluate the impact of Great Ormond Street steering group members for their ideas and helpful discussionissuing central contact details and the appointment of the LTFU Administrator as Rebecca Yates our long-term follow-up administrator and key worker. All staff from thethe key worker. haematology and oncology unit for taking part in the audit by documenting calls.
    • 18 Building the evidence: Developing the winning principles for children and young people Treatment summary and care planning The Christie NHS Foundation Trust and Great Ormond Street Hospital for Children Key points about the document and process NHS Trust worked together on this project to develop, test, implement and evaluate All interested parties (survivors, primary care and shared care clinicians) will receive a a survivors treatment summary and care plan (TS/CP). clear, brief, written summary of the type, doses and duration of chemotherapy/radiotherapy (including site) received, any possible late toxicities and The main purpose of this project was to create and test a care plan and then follow-up plans - including post disease specific surveillance implement its use into routine long-term follow-up care. The care plan (CP) is an individualised summary of clinical record, which whilst satisfying information need, Cancer care centres will retain clear information about previous treatment and any is designed to empower survivors and parents with a higher degree of self- healthcare professional involved in the management of any subsequent health management, and as a result influence improved patient experience. problem. The main focus was on service design and improving communications, The TS/CP is a new service innovation that aims to improve communication and incorporating new technology, protocols and innovative ideas into clinical practice, provision of information for our teenage and young adult cancer survivors. for the benefit of the survivors and family. The format of the care plan was The primary benefit of this quality information will improve patient support, choice, developed in consultation with clinicians, survivors and other stakeholders self-management and potentially benefit their use of NHS services. It may improve (including primary care clinicians). Overall, the aim was to produce a format that patients’ uptake to appropriate follow-up care, improving clinic attendance and would be easy to complete, yet comprehensive. reducing DNA rates. Care plans are now issued routinely at entry to the LTFU, at transition clinic The TS/CP aims to inform and empower the survivor. It improves self management appointment (GOSH), and at the Christie at the end of treatment. A copy of the and should help identify future signs and symptoms, and what to look for in care plan is also provided to the relevant GP and paediatric shared care unit where relation to late effects of treatment. appropriate.
    • Building the evidence: Developing the winning principles for children and young people 19Evidence A total of 209 questionnaires were sent out, with a response rate of 58% prior toA baseline evaluation was conducted at The Christie and Great Ormond Street the deadline of 16 August. Individual responses received were:Hospitals. A questionnaire surveyed survivors and guardians about their LTFUexperience, and their views on the developed Care Plan. The results from The • Health care professionals: 13/13 = 100%Christie and GOSH appeared in the last evidence document, and a combined • GPs: 27/77= 35%summary of these results from both hospitals were presented verbally at the • Shared care: 4/20=20%workshop by Dr Gill Levitt. • Young people: 9/69= 13% • Parents: 5/36=13%.Key points• Overwhelming acceptance of the developed TS/CP, affirming it was a good The questionnaires distributed can be categorised into two groups - the questions idea and useful asked of the NHS professionals, and the questions asked of the users of the service.• 69% would not need someone to go through the TS with them• 42% respondents would like the TS at the end of treatment The core questions asked of the NHS professionals pertained to their views on the• 47% would like the TS at the start of long-term follow-up usefulness of the document, whether the layout, information (including managing• 98% thought the layout was easy to follow low and medium risk stratified patients) and length of the form was appropriate.• 92% thought the length and detail was about right• 96% said that the follow up care plan was important to them The health professionals who have been contributing to completing the TS/CP were• 55% preferred paper copies of the TS also asked for their comments on the usability of the document and suggestions to• 41% preferred to have both paper and electronic copies of the TS improve the template.• Spoken information was mostly remembered, 50% of young people did not remember being given any written information about long-term effects The questionnaires sent out to the parents and young people included questions• Satisfaction with information remained high, irrespective of how it was delivered from the baseline questionnaires including more specific questions related to their• The majority felt they could ask questions when attending clinic personalised TS/CP similar to the questions asked of the health care professionals.• Preferred ways of getting information remains mainly with the doctors. Findings from health professionalsThe personalised TS/CPs were issued to patients and guardians as appropriate from Layout of the treatment summary: 83% questioned felt that the TS was veryJanuary-June 2010 by GOSH and the Christie and an additional six test sites were useful, with 91% finding the layout easy to follow and the detail adequate, onlyapproached to participate in the testing phase of the care plans. The test sites 75% stated that it was easy to fill in. Suggestions: make it smaller, drop downinvolved were The Christie NHS Foundation Trust, Great Ormond Street for Children boxes to be formatted, and to use prompts to aid the follow up, e.g. for a patientNHS Trust, University College London Hospitals NHS Foundation Trust, The Royal who has had a nephrectomy a prompt to ensure that yearly blood pressure andMarsden NHS Foundation Trust, Alder Hey Children’s NHS Foundation Trust and urinalysis is carried out. Overall, it was felt important to get a template that worksLeeds Teaching Hospital NHS Trust. for an individual patient population. Specialised IT support was recommended to make the form easier to collate and amend.At least four months after the issue of the TS/CP, a questionnaire survey was sentout to evaluate its overall usefulness. Survivors, guardians, GPs and appropriateshared care clinicians were surveyed. Preliminary results on the initial response tocompletion of questionnaires are outlined as follows:
    • NHSCANCER NHS ImprovementDIAGNOSTICS NHS Improvement With ten years practical service improvement experience in cancer, diagnostics and heart,HEART NHS Improvement aims to achieve sustainable effective pathways and systems, share improvement resources and learning, increase impact and ensure value for money to improve the efficiency and quality of NHS services. Working with clinical networks and NHS organisations across England, NHS ImprovementLUNG helps to transform, deliver and build sustainable improvements across the entire pathway of care in cancer, diagnostics, heart, lung and stroke services.STROKE NHS Improvement 3rd Floor | St John’s House | East Street | Leicester | LE1 6NB Telephone: 0116 222 5184 | Fax: 0116 222 5101 www.improvement.nhs.uk ©NHS Improvement 2010 | All Rights Reserved Publication Ref: IMP/cyp2 - September 2010 Delivering tomorrow’s improvement agenda for the NHS
    • 20 Building the evidence: Developing the winning principles for children and young people Timings: The amount of time required to complete the document was stated as ‘does not exist’ but also that there is a risk and therefore requires knowledge / follows for the three levels of care, mean time in minutes: empowerment around this, instead of ‘might be some’, it was felt there was not a need to list all the systems that are unlikely to be affected. GPs Category Mean time (minutes) Layout of the treatment summary and care plan The information included in the document and the layout were indicated as easy to Level 1 20 follow (96%), easy to understand (92%), appropriate language used (92%), and the follow-up plans were described as adequate by (93%) with some concern that Level 2 28 it was a bit too long. The level of detail was felt to be appropriate by 85% of participants, and 15% felt there were specific areas missing, these included final Level 3 63 height of the survivor, long-term prognosis and more detail on specific problems expected due to late effects. Due to some of the formatting issues ,noted by some responders it was noted that some of the drop down boxes had not been 40% questioned felt that this was out of their current workload commitments and completed and it was not clear to GPs if this was an omission or not. it was noted that gathering of appropriate data by extracting from notes may increase this time even further. Shared care Layout of the treatment summary and care plan Views on the care plan The information included in the document and the layout was described as easy to Some suggestions were made, and will be considered for incorporation into future follow (100%). Follow-up plans and level of detail were also described as adequate care plans. (75%) but it was noted that one consultant felt there was a lack of detail in the systems at risk section, and also that the statement ‘there may be problems’ did not General comments help in looking for them; this is further supported by the statements from the The timing of the handing out of the TS/CP was also highlighted as an issue, with health professional. The length of the form was also considered to be about right recommendations including giving the TS/CP for short-term follow-up at the end of (100%), but 50% felt there were some areas missing. therapy and discuss long-term follow-up at a later date when relapse is less of a concern. Managing these patients’ follow-up Both groups were asked about how confident or willing they would feel managing Findings of General Practitioners and Shared Care Hospitals the follow-up and surveillance of low and medium risk stratified patients. 77% of GPs and 75% of shared care consultants stated that they had found the written summary useful, and 85% of GPs wanted this available to them when the Comments on this level of management are as follows: patient attends their clinic, with only 50% of shared care supporting this idea. The timing of receiving the document for GPs was most helpful at the end of treatment Low risk (37%) and when moving to another clinic or doctor (36%). The shared care Overall, comments related to the specialist training of GPs, the need for a recall consultants stated that they would like to receive them at the end of treatment system for follow-up care and some concerns regarding the funding of this activity. (40%) and at the start of late effects follow-up (40%). Medium risk Risk of potential problems: 84% stated this was an important aspect of the Overall, mention of the need for a robust recall system that could reach this very document, but there were concerns noted about the acceptability of the wording, mobile population - this would rely on sophisticated IT systems. Education was with only 61% agreeing; comments included changing problem to either ‘exists’ or highlighted again, with some suggestions on approaches to this ongoing education.
    • Building the evidence: Developing the winning principles for children and young people 21 Specifically, we can detail the following: Group Not at all Not very Able Confident Very Not • The time and resources required to complete and deliver TS/CP may be confident confident Confident stated substantial, especially for patients with complex cancer histories, those currently described as level 3 General • Longer clinic times may be required for discussing the treatment summaries, to Practitioners make sure all relevant information is communicated to the survivor/carer, and the summary information is understood Low risk 0% 19% 30% 33% 11% 7% • Engagement of all clinicians is vital to their success, to complete at end of treatment and to maintain Medium risk 15% 30% 37% 7% 7% 4% • Some amendments, in terms of local need and patient need related to level of care may be required to the documents.Findings of young people and parents AcknowledgementsThere were 14 responses to the assessments after the TS/CP were issued, nine from Gill Levittyoung people and five from parents. We present here some preliminary comments; Consultant in Oncology and Late Effectsmore detail will be available on the completion of this aspect of the evaluation Great Ormond Street Hospital for Children NHS Trusttowards the end of 2010, when we anticipate an overall increased response rate. levitg@gosh.nhs.ukFor the majority of the young people, information recall and understanding of Ed Smithinformation was high, where for example 89% could remember conversations Consultant Clinical Oncologistabout side-effects of treatment. They wanted information before the start of The Christie NHS Foundation Trusttreatment, and found most information useful. What was missing was information ed.smith@christie.nhs.ukabout financial support, and access to counselling. Treatment Summaries werefound to be useful, of an appropriate length, with the right amount of detail. In Andrea Slaterthe case where one young person had shared their TS with a new professional it Project Manager - Survivorship Programmewas found to be very helpful. Young Oncology Unit, The Christie NHS Foundation Trust andrea.slater@christie.nhs.ukFor these parents, they could not always remember conversations about side-effects, but in general they understood information given to them and felt they Ramesh Modasiacould ask questions if anything was not clear. They wanted information to be Service Improvement Facilitatorongoing, and overall were satisfied with the process. The TS was found to be very NHS North Central London & West Essex Cancer Commissioning Networkhelpful in discussions with a GP by one parent. ramesh.modasia@islingtonpct.nhs.ukKey learning points Susan MehtaThis is very preliminary data, questionnaires are still being distributed and analysed; Clinical Nurse Specialist Long-Term Follow-Upbut we can make some tentative comments based on both quantitative and Great Ormond Street Hospital for Children NHS Trustqualitative findings revealed in the data. In general we can see that TS/CP has been mehtas@gosh.nhs.ukviewed favourably, with some minor amendments required to layout andinformation. CYP Evaluation team led by Faith Gibson.
    • 22 Building the evidence: Developing the winning principles for children and young people Risk assessment including psychosocial assessment Risk assessment The British Childhood Cancer Survivor Study (BCCSS)6 provides an opportunity to Evidence-based risk stratification for planning clinical follow-up of childhood investigate the statistical relationships between types of cancer and treatment cancer survivors experienced and the risks of adverse health and social outcomes. Such evidence is an essential requirement for the development and implementation of safe risk There has been considerable success achieved in the treatment of cancer diagnosed stratified packages for health and social care following cancer diagnosis and in childhood across recent decades. Now 80% of those diagnosed may anticipate treatment in childhood. surviving at least five years and most of these survivors are cured of their original cancer. Unfortunately we know that those who live for decades subsequent to The BCCSS provides a large-scale population-based group of survivors for whom their cancer diagnosis experience significant excess mortality1 and morbidity2,3,4 there has been comprehensive ascertainment of information relating to adverse which is related to types of cancer and treatment experienced. In 2001 the United health and social outcomes. The adverse health outcomes include: cause of death; Kingdom Children’s Cancer Study Group (now the Children’s Cancer and Leukaemia subsequent primary cancers; cardiovascular, pulmonary, renal, hepatic and Group) proposed three risk strata for the prospective clinical follow-up of survivors.5 endocrine problems. The social outcomes include: educational attainment; The intensity (or level) of clinical follow-up proposed increased as the anticipated employment status and occupational level; marital status; health status; health risk of adverse health outcomes increased from low, to moderate, to high. This behaviours. See www.bccss.bham.ac.uk for comprehensive information. Although proposed method of risk stratification was not formally evidence-based, but based only summary treatment information is available on the generality of the BCCSS on the consensus knowledge and experience of an expert group.5 cohort there are two population-based groups of survivors for whom we have more
    • Building the evidence: Developing the winning principles for children and young people 23detailed treatment information available and together these provide over 2000 Emma Lancashiresurvivors. In addition, we are obtaining information on treatment (randomisation Research Fellow, University of Birminghamarm) from the MRC childhood leukaemia trials investigators for the leukaemia e.r.lancashire@bham.ac.uksurvivors within the BCCSS cohort. Gill LevittConsiderable progress has been made in extracting and calculating cumulative Consultant in Oncology and Late Effects,doses of specific types of chemotherapy. In addition, ascertaining and coding of Great Ormond Street Hospital for Children NHS Trustanatomical sites directly exposed to radiotherapy has been completed for most of levitg@gosh.nhs.ukthe sub-cohort for which detailed treatment records are available. By October weanticipate that the treatment information should be in an appropriate format foranalysis. References Cancer Therapy Evaluation Program, Common Terminology Criteria for Adverse Events, Version 3.0, DCTD, NCI, NIH, DHHS March 31, 2003 (http://ctep.cancer.gov), Publish Date: August 9, 2006The information relating to adverse health outcomes cannot be used directly fromthe BCCSS questionnaire, but needs to be coded using an internationally Chronic Disease in the Childhood Cancer Survivor Study Cohort: A Review of Published Findings.recognised severity code7. This work should be completed by the end of September JCO 27(14): 2339 – 2355so that preliminary analysis may begin on schedule at the start of October. Diller L, Chow EJ, Gurney JG, Hudson MM, Kadin-Lottick NS, Kawashima TI, Leisenring WM, Meacham LR, Mertens AC, Mulrooney DA, Oeffinger KC, Packer RJ, Robison LL, Sklar CA (2009)By the start of October 2010, all relevant data should be available for analysis and itis anticipated that findings will be available by December 2010. Further analysis will Geenen MM, Cardous-Ubbink MC, Kremer LCM, van den Bos C, van der Pal HJH et al. (2007)continue in the new year. It is likely that there will ultimately be two manuscripts: Medical Assessment of Adverse Health Outcomes in Long-term Survivors of Childhood Cancer.one relating to adverse health outcomes; the other relating to adverse social JAMA 297(24): 2705 – 2715outcomes. The first of these (adverse health outcomes) should be completed by theend of June 2011 and subsequently the manuscript relating to social outcomes. Hawkins M, Lancashire E, Winter D, Frobisher C, Reulen R, Taylor A, Stevens M, Jenney M (2008) The British Childhood Cancer Survivor Study: Objectives, Methods, Population Structure, ResponseHowever, there will be an emphasis on providing practical risk stratification to Reulen RC, Winter DL, Frobisher C, Lancashire ER, Stiller CA, Jenney ME, Skinner R, Stevens MC,inform the advise to commissioners and shape the models of care to be prototyped. Hawkins MM (2010) Long-term Cause-specific Mortality among Survivors of Childhood Cancer. JAMA., 304(2): 172-179Acknowledgements Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM et al. (2006) Chronic HealthMike Hawkins Conditions in Adult Survivors of Childhood Cancer. N Eng J Med 355(15): 1572 – 1582Chair in Epidemiology & Director of Centre for Childhood Cancer Survivor Studies,University of Birmingham Rates and Initial Descriptive Information. Pediatr. Blood Cancer, 50, 1018-1025.m.m.hawkins@bham.ac.uk Wallace WHB, Blacklay A, Eiser C, Davies H, Hawkins M, Levitt GA, Jenney MEM, on behalf of the Late Effects Committee of the United Kingdom Children’s Cancer Study Group (UKCCSG)Adam Glaser (2001). Developing strategies for long term follow up of survivors of childhood cancer. BMJ 323:Consultant Paediatric & Adolescent Oncologist, Leeds Teaching Hospitals NHS Trust 271 – 274adam.glaser@leedsth.nhs.uk
    • 24 Building the evidence: Developing the winning principles for children and young people Psychosocial assessment • There is a need for an effective screening tool to be available at all stages of Psychosocial screening tool development and validation – The Royal Marsden NHS treatment, but especially in the late effects population who do not have many Foundation Trust appointments, and whose problems may be missed • To use the tool also to target those who are DNAs may also afford insight into Introduction accessing services and identifying need in a difficult-to-reach population The objective of this project is to develop and validate a brief psychosocial screening • The prevention and early identification of problems leads to better and earlier use tool to be used with survivors of childhood cancer. The aim will be to screen both of resources, and to better targeting of support for problems in psychological functioning and problems with memory and learning, • Serious thought must also be given to those who score highly on problems, but and to ascertain if the child or parent wishes to receive help. The screening tool will who do not want help, how to ensure they feel more at ease in asking for help, be always used in conjunction with an action plan and a guide to how to access that we can help to ascertain when they may want help, and where such help is psychological support. If used correctly, it is hoped the screening tool could be used provided. Considering other methods of support such as telephone preventatively. A traffic light system is proposed (Green child has minimal counselling/online support/PDAs and alternative methods of access may all save psychological or learning problems; Amber - watch, maintain contact and offer on resources and may enable staff to reach young people in novel or cost- referral as appropriate; Red - contact family, offer support, and put in place support effective ways. plan locally or at the Marsden Oncology Centre if appropriate). The tool could be used both face-to-face in clinic, or remotely for those who choose not to attend, Evidence but who may respond to a non-face-to-face contact. Results of the pilot study suggest that each age-appropriate screening tool and accompanying parent-proxy is acceptable and useable to paediatric patients and Patient perspective their parents/carers. Pilot phase …thought the screening tool was ‘straightforward, to the point and relevant’. Piloting the screening tools with patients and their families has provided us with another viewpoint. We plan to develop larger-font versions for visually-impaired ‘Patients doing transplant/treatment 6 to 12 months ago have different patients, include other problems on the Problem List (e.g. behaviour problems), re- needs/problems from those who had treatment two to three years ago’. word and re-structure some elements of the screening tools that participants found ‘muddled’, and hopefully add some colour. Key learning points • The aim is to ensure the screening tool distinguishes effectively between those Patients and their parents/carers were randomly invited by an Assistant Psychologist patients with and without psychological problems, focusing on the correct to participate in the acceptability pilot while they waited for their outpatient domains and validating it against existing and reliable measures of depression, appointments. anxiety, behaviour, and memory/neuropsychological functioning • Stratifying the level of psychosocial intervention needed by children and young For patients under the age of five years old, feedback was obtained from the people in the late effects population will ensure that psychological care resources parent/carer only. For children within the age bandings of five to seven years old, are used efficiently, and patients receive the appropriate level of eight to twelve years old, and thirteen to seventeen years old, both the child/young support/intervention person and parent/carer were asked for their views. For patients of eighteen years • Young people attending late effects clinics may not have entered the workforce and older, feedback was sought only from the patient: yet. This may be in part due to depression/anxiety/lack of motivation. Screening for psychosocial problems and providing the appropriate level of intervention may lead to less government spending on incapacity benefits due to mental illness
    • Building the evidence: Developing the winning principles for children and young people 25• With 51% of children and young people meeting or exceeding the National Comprehensive Cancer Network (NCCN) recommended cut-off of ≥4 for worry, Innovation the pilot has highlighted the benefits of screening for psychosocial problems and • To our knowledge, no other research has been undertaken to develop a a need for psychosocial support within the paediatric late effects population. The memory and learning screening tool for the paediatric late effects population Worry and Memory Thermometers have not yet been validated, and therefore • The tool is being developed according to the specific needs of survivors of caution must be taken when applying the cut-off for distress in adult oncology to childhood cancer. Other psychosocial screening tools have been adopted for children and young people use in adult oncology, but none has been used in a late effects oncology• Another important area in need of addressing is the extent of memory and setting learning problems within the childhood cancer survivor population. 29% of • The tool incorporates both psychosocial and cognitive late effects. The latter children and young people reported a level of ≥5 on the Memory Thermometer. focuses on the most common cognitive difficulties (Gross-King, Booth-Jones Memory and learning problems were endorsed by patients and/or their parents & Couloris, 2008), a feature not included in other brief screening tools across all age groups • Echoing a move in long-term follow-up of childhood cancer survivors• Interestingly, despite 50% of 13-17 year olds scoring at the tentative cut-off of ≥4 towards a stratified model of care provision, the screening tool also classes for worry and upset, none wanted help with any of the worries they had. Possible patients according to risk level (low, moderate or high) using a traffic light reasons for this include the wording of the ‘need for help’ question on the system. A protocol for classifying patients according to an appropriate level screening tool, feeling that this is not the right time to seek help, or feeling that of care, will require consideration of both physical and psychological needs. their level of worry is manageable. The screening tool has the potential to play an effective role in this process.The impact of the improvement Productivity – cost savings Quality (including safety) Savings delivered/anticipated: Stratifying the level of psychosocial intervention • Quality of care is being improved by the early screening of worry and needed by children and young people in the late effects population will memory problems in order to effectively detect potential mental health ensure that psychological care resources are used efficiently and patients problems as early as possible and ensure that the appropriate psychological/ receive the appropriate level of support/intervention. This would lead to cost social intervention is offered savings, which is echoed by Kazack, Cant, Jensen, McSherry, Rourke et al • Quality of access to education improved by early indications of memory/ (2003). The Depression Report (2006) highlights a need for earlier prevention learning problems, to identify and target additional support and minimise and intervention of depression and anxiety. Young people attending late cognitive problems effects clinics may not have entered the workforce yet. This may be in part • Improving the standard of psychosocial care due to depression/anxiety/lack of motivation. Screening for psychosocial • NICE Guidelines (2005): ‘Psychosocial services have an important role to play problems and providing the appropriate level of intervention may lead to less at all stages along the patient pathway, including after completion of government spending on incapacity benefits due to mental illness: treatment and into adult life’. Ensure that we meet unmet needs through access to psychosocial services • Quality of life and impact on use of NHS services • Better patient experience – care they receive and the right level of care • Better utilisation of resources. they receive. A chief benefit of introducing the screening tool will be improved and targeted use of psychologist time, focusing full assessments and interventions where needed, and referring on to more local services should this be necessary.
    • 26 Building the evidence: Developing the winning principles for children and young people Acknowledgements Effectiveness evidence Mary Taj • Effective healthcare is efficient healthcare. We aim to improve the efficiency Consultant Paediatric Oncologist, The Royal Marsden NHS Foundation Trust of mental health screening in the paediatric/young person late effects mary.taj@icr.ac.uk population. We also would expect that the development of the tool and action plan will have an impact on the quality and timeliness of mental Lesley Edwards health care offered to this population: to improve it. Consultant Clinical Psychologist Lead for Paediatric and TYA Psychological Medicine Service The Royal Marsden NHS Foundation Trust lesley.edwards@rmh.nhs.uk Prevention Shyama Persaud • The tool will aim to prevent children and young people in need of Project Co-ordinator, Late Effects Team psychological input from remaining undetected, ensuring that both Children’s Department, The Royal Marsden NHS Foundation Trust medical and psychological needs of children and young people in the late shyama.persaud@rmh.nhs.uk effects population are being met • The tool will also look at memory and learning and therefore the aim will Catherine Seaman be to assess early for cognitive problems, refer to appropriate agencies and Assistant Psychologist, The Royal Marsden NHS Foundation Trust early intervention should prevent greater problems later on (Mulhern et al 2004), thus having an impact on special needs provision References • The implementation of the paediatric psychosocial screening tool, by the Gessler, S., Low, J., Daniells, E., Williams, R., Brough, V., Tookman, A., & Jones, L. (2008). Screening for distress in cancer patients: is the distress thermometer a valid measure in the UK and does it CNS or other clinician will ensure that psychosocial and memory/learning measure change over time? A prospective validation study. PsychoOncology, 17, (6): 538-47. issues are picked up sooner, ensuring earlier intervention and prevention of further, more significant problems arising in the future. Gross-King, M., Booth-Jones, M., & Couluris, M. (2008). Neurocognitive impairment in children treated for cancer: how do we measure cognitive outcomes? Journal of Paediatric Oncology Nursing, 25, (4), 227-232. Kazak, A .E., Cant, M. C., Jensen, M. M., McSherry, M., Rourke, M. T., Hwang, W-T., Alderfer, M. A., Beele, D., Simms, S., & Lange, B. J. (2003). Identifying Psychosocial Risk Indicative of Subsequent Personalised Patient Care and Involvement Resource Use in Families of Newly Diagnosed Pediatric Oncology Patients, Journal of Clinical • Patients fully involved in focus group in drawing up problem areas Oncology, 21, (17): 3220-3225. following treatment for cancer • Patients involved in assessing the screening tools acceptability and usability, Mulhern, R. K., Merchant, T. E., Gajjar, A., Reddick, W. E., & Kun, L.E. (2004). Late neurocognitive sequelae in survivors of brain tumours in childhood. The Lancet Oncology, 5, (7), 399-408. involving both child and parent and taking their views seriously • Using the screening tool will allow the patient to ask for help in clinic or National Comprehensive Cancer Network. (2009). NCCN practice guidelines in oncology: Distress indicate they would like help, to allow quicker access to the referral Management. V.1.2010. Retrieved 17th December 2009, from pathway. The patient will also be given a support booklet to ensure he or www.nccn.org/professionals/physician_gls/PDF/distress.pdf she has all the information to hand about support and that they have a National Institute for Health and Clinical Excellence (2005). Guidance on Cancer Services: Improving choice to ask for help at the primary centre or more locally or to access Outcomes in children and Young People with Cancer, The Manual. Retrieved 9th August 2010, web-based or group-based support. from, http://guidance.nice.org.uk/CSGCYP/Guidance/pdf/English The Centre for Economic Performance’s Mental Health Policy Group. (2006). The Depression Report: A New Deal for Depression and Anxiety Disorders. The London School of Economics. Tuinman, M. A., Gazendam-Donofrio, S. M., & Hoekstra-Weebers, J. E. (2008). Screening and referral for psychological distress in oncologic practice: Use of the Distress Thermometer. Cancer, 113 (4): 870-878.
    • Building the evidence: Developing the winning principles for children and young people 27IT system populatedIntroduction FocusWebsite technology has been utilised in a number of the test sites: The purpose of the change to the existing website was to provide a single point of• Addenbrooke’s (Cambridge) access for many types of information relating to young people with cancer being treated• St James’s (Leeds) in our region, the idea being that they need not have to come to Cambridge to find the• Great Ormond Street (London) information and that they may gain some peer support reading about others affected by cancer and discussing their thoughts in an online forum.Addenbrooke’s, CambridgeCambridge have assessed the impact of developing an age specific website to Planned outcomesprovide information and peer support for young people going through and after Planned outcome is to improve information and support for young people even ifcancer treatment. The aim was to also see if the website would improve attendance they cannot directly get to our service. It saves them money and time spent onat events aimed at young people, or improve peer support. travel, as all information can be accessed in one place. It acts as reassurance that others have experienced similar problems (even if the individual cannot begin to talk to someone about it). It improves attendance at peer support activities which again reduces anxiety, improves wellbeing and we hope will improve reintegration into society.
    • 28 Building the evidence: Developing the winning principles for children and young people Prevention of mental health problems associated with lack of support or feelings of The challenges isolation. It should also help with reintroduction to education and work due to Another initiative that Cambridge Addenbrooke’s was hoping to implement was contact information about how to get help with these. new technology to ensure cancer patients are followed up appropriately, detecting recurrences and monitoring toxicities at timely intervals, not lost to follow-up. Evidence An initial feedback group reflected that overall the website was much better since it The Cambridge model aim is to build up a database of all off-treatment cancer was redesigned (more user friendly). We analysed the use of the website and found patients (with a complete treatment summary/care plan) and a working diary-like that peaks occurred in relation to activity events such as Find Your Sense of Tumour system that ensure patients are recalled at appropriate intervals for (a four-day conference, solely for young people who have or have had cancer), review/investigations. Unfortunately, the development of the second part is still in family support days or other activity events. The most frequently accessed areas progress – the major stumbling block being issue of patients’ data confidentiality were Patient Stories and Events. that does not allow the American-based IT firm to access the installed system at Addenbrooke’s to modify/develop. 150 treatment summaries have been The least used area was the forum. At a discussion group it was clear this was due incorporated so far into an American-based IT system (OncoLog Late Effects Tracker) to the time delay between posting a comment, it being assessed and approved, and the system has now incorporated CCLG therapy based long-term follow-up then a reply. They also did not like that everyone could read their comments. As a guidelines as per UKCCSG Late Effects Group Practice Statement, April 2005. consequence, the group set up their own Facebook™ page to allow a more comprehensive forum. This is not attached to our website but we are exploring the Staffing resources proved problematic throughout the project (dedicated IT support idea of a link (after assessing governance requirements). at Addenbrooke’s to liaise with American-based IT firm to work on the system - unfortunately, to no avail). Also, there was a need for a data manager to input Baseline assessment showed poor attendance at many events (less than 4 young treatment summaries. people with or without their families). Recent assessment shows this has more than doubled and we have to either turn people away or arrange another event. A Once the information is compiled, treatment summary and care plans will be sent to baseline assessment of the old Trust webpage showed very little activity; this has patients, shared care hospitals, GPs and other professionals including adult teams clearly improved with the new design and adding more stories and events. when the patient is transitioned. Recurrences or late effects would be detected/managed at an earlier stage (which would be likely to lead to a better There is a need to provide support and information for young people and their outcome) if robust surveillance systems are in place. To avoid patients lost to families during and after treatment for cancer. A website is a relatively low cost follow-up and be able to provide new information to appropriate group of patients method to ensure equal distribution of information and provide some support for when new evidence arises, patients are in the database. those in geographically challenging areas. Unfortunately, OncoLog IT system is not up and running yet. With current standoff, Potential in relation to the QIPP(P) agenda we are now discussing with in-house IT system to develop working diary system Once the information is compiled, treatment summary and care plans will be sent to (JCIS) – much more promising as some features already developed for some other patients, shared care hospitals, GPs and other professionals including adult teams cancer groups, patient information transfer across hospital systems at same site is when the patient is transitioned. much easier and with benefit of in-house IT support. Recurrences or late effects would be detected/managed at an earlier stage (which would The conclusions so far indicate it is much better to develop IT system in-house, with be likely to lead to a better outcome) if robust surveillance systems are in place. dedicated support staff. All systems need to be individualised, according to local policy (not easy to simply take something American-based to adapt to UK In addition, patients are identified in the database which will assist the process to environment). avoid patients being lost to follow-up and be able to provide new information to appropriate groups of patients when new evidence arises.
    • Building the evidence: Developing the winning principles for children and young people 29Acknowledgements 268 patients were included in baseline evaluation: 65 patients were under 18 yearsHelen Hatcher of age (9 new referrals, 56 follow-up) and 203 were aged 18 years and over (13Consultant in Medical and TYA Oncology new and 190 follow-up).Addenbrooke’s Hospital, Cambridgehh321@medschl.cam.ac.uk Results will be analysed after collection of repeat evaluation in order to determine whether increased numbers of service users and their GPs have access to details ofAnny Wong the relevant key worker, service contact details and treatment summary/care-plan.Clinical Fellow (Oncology)Addenbrooke’s Hospital, Cambridge The project was implemented via the following key stepsanny.wong@addenbrookes.nhs.uk EngagementMichael GattensConsultant Paediatric Haematologist 1. GPsAddenbrooke’s Hospital, Cambridge The first task for the project was to ensure ownership of the work at the highestmichael.gattens@addenbrookes.nhs.uk level and across all stakeholders. The project aims, and anticipated outcomes, were discussed with the Yorkshire Cancer Network.Leeds - Yorkshire Cancer Network A decision was made at the outset to ensure that there was sufficient clinical leadership in place in order to ensure wide engagement, the positioning of theUsing information technology to best effect project at a high level as well as a ‘hands-on’ clinical drive. Dr Glaser was secondedThe Yorkshire Cancer Network (YCN) initiative comprises two integrated as clinical lead for the project as well as being appointed as clinical lead forcomponents, namely the development of a clear, sustainable and safe shared-care survivorship for the YCN to undertake these roles.pathway and also the development of a Community Cancer Portal (CCP) that aimto develop and test a supported self-care approach to the management of long- The success of the project would rely heavily on GP support for the concept ofterm survivors of childhood and adolescent cancer. shared care between GPs and the Cancer Centre. In order to better understand GPs’ views of both the concept and proposed mechanics of the pathway, Dr GlaserThe CCP is an e-platform that will not only allow seamless communication and made several presentations at Leeds PCT postgraduate training sessions – securinginformation exchange between the tertiary centre and any future primary-care both invaluable feedback but also agreement by some GPs to play a more activebased partners in follow-up, but also between patients themselves and the tertiary role in the project via a proposed GP focus group.team. Finally, it will facilitate peer support for patients via an online chat forum. 2. CommissionersBaseline data to date The radical nature of the proposed shared care pathway would necessitateConsiderable baseline data has been/is being collected against which the scale and sophisticated commissioning arrangements to ensure:consequences of testing of the CCP and transformed long-term follow-up care • Ongoing funding support of the Cancer Centre LTFU Team to both continue withpathway will be evaluated – including an audit to understand the current pathway late effects monitoring of high risk patients but also to advise and support bothand whether patients have access to the Internet. (low risk) patients and GPs in any shared care arrangement • Appropriate incentives for GPsIn addition, separate audits were undertaken for the initial visit as well as follow-up • Arrangements to support tests to be undertaken in the Cancer Centre, localvisits over a four month period. The process will be repeated after 12 months. hospital or GP practice as necessary/chosen by patient • Flexibility to allow patients to move to and from shared care as they choose or becomes necessary.
    • 30 Building the evidence: Developing the winning principles for children and young people 3. Patients/users However, a challenge to the proposed model of care came from the survey’s results Both a user and the YCN User Facilitator are key stakeholders within the Steering that 12% did not find the concept of remote e-follow-up acceptable. and Pathways Sub-groups. Our patient representative has specifically helped in understanding and improving the current cancer pathway. User views have been • LTHT staff have undertaken an evaluation of clinic satisfaction (funded via CLIC established through questionnaire surveys administered in clinic (concern that we Sargent). The main conclusions are: have not captured the views of non-attenders). • Adult survivors of childhood cancer have important problems with psychological functioning and social difficulties and reduced quality of life, 4. IT although this varied widely between individuals, implying a need to The YCN supported the employment of an IT developer to progress the CCP - under individualise approaches to care the professional support and direction of the Leeds Teaching Hospitals NHS Trust • Quality of life and social problems appeared not to diminish on average with (LTHT) IT Department. increasing time from diagnosis, implying a need to continue to support these individuals The LTHT IT were cognisant of the potential benefit for their patients and services • Patient satisfaction with long-term follow-up care was generally very high, and should the CCP prove successful. As such, they contributed invaluable leadership may be measurable in routine settings with a simple three-question approach. and support – including project management – in ensuring the CCP was delivered. A key to the success in delivering the IT solution was to build upon the success of a Development of the Community Cancer Portal (CCP) renal web-based system with some significant similarities. The clinician involved in February 2010 witnessed the first live demonstration of the CCP. The demonstration leading the development of the renal system was paid on a sessional basis to help by IT and clinical colleagues from Leeds Teaching Hospitals NHS Trust was a shape and steer the CCP project. culmination of one year’s work by them on behalf of the YCN. Challenges In addition to showing that the technology does indeed work, the demonstration Despite clear support for the project, it has proved difficult to secure the depth of also clearly showed the CCP’s future capability to, for example, communicate commissioning support that has been required. Many of the key commissioning securely between tertiary, secondary and primary care; communicate securely questions remain. It is hoped that through a better understanding of the current between tertiary care and the survivor; to automatically generate Survivor Cancer and possible future costs there will be a firmer basis for more meaningful Care Plan/Pathways and Treatment Summaries; and the potential to provide a ‘chat discussions with commissioners. To this end the YCN project has participated as part room’ for improved peer support. of an NCSI economic evaluation exercise. Evidence to-date includes: • Questionnaires on current patients’ use of IT and their attitude to the use of IT in supporting possible shared care. The survey of 51 adult survivors of young peoples cancer attending the Leeds LTFU programme revealed that 90% were comfortable with the use of the internet to help with their healthcare. Furthermore, 88% felt comfortable with follow-up being delivered via the internet for some or all of the time.
    • Building the evidence: Developing the winning principles for children and young people 31From March to August 2010, the team has been testing the basic functionality ofthe CCP, with a focus on the following to ensure: Innovation • Transforming the pathway from a traditional tertiary-based one, to one that• That the CCP interfaced with LTHT data-sets provides care service closer to home• That the system automatically generated treatment summaries • Providing web-based access for both patient and GP to tertiary centre’s care• That Care Plans for on-going late effects monitoring can easily be created from history/plans and appropriate information CCP based pathways. • Providing web-based access for both patient and GP to the late effects teamOngoing challenges • Developing a web-based system that allows community-based healthcareThe project timelines have slipped during this period, primarily due to two reasons: staff to access records held at a tertiary level • Development of a web-based platform that can easily and cheaply be• The need to undertake external ‘penetration’ testing to ensure the system was adopted by any trust. secure against hackers• The retirement of the CNS supporting the project.The project is being formally evaluated against the QIPP(P) framework. Anticipated Productivitybenefits include: • Late effects team able to support a greater number of patients • Fewer tests undertaken at the cancer centre • Tests undertaken more cheaply in community Quality • Late effects team’s skills targeted on patients most in need • Patient choice over model of follow-up • By providing care closer to home this should ensure less time off work/ • Possibility of care closer to home for a significant (stratified) patient group education for the patient/carer • Patient peer support via CCP • No unnecessary outpatient visits for tests. • Follow-up tests coordinated • Direct access by GP/other care professionals to care records/treatment plans • CCP generated treatment plans for all patients • Late Effects team able to focus support on patients most in need Prevention • Collection of comprehensive outcomes data. • Cancer survivor care plan available to all patients and GPs/other care providers • Comprehensive outcomes database – wherever patient followed up.
    • 32 Building the evidence: Developing the winning principles for children and young people Acknowledgements Patients/users The CCP and shared care pathway will: Adam Glaser • Lead to patients being fully informed regarding their treatment histories, Consultant Paediatric Oncologist, Leeds Teaching Hospitals NHS Trust care plans and follow-up test results and Clinical Director, National Cancer Survivor Initiative • Ensure patients have on-line access to appropriate relevant patient adam.glaser@leedsth.nhs.uk information • Ensure patients have ownership of their proposed follow-up pathway and Carol Ferguson make patients integral to the management of the pathway e.g. ensuring Service Improvement Lead, Yorkshire Cancer Network tests are undertaken in accordance with the pathway carol.ferguson@ycn.nhs.uk • Allow patients to share their treatment histories/care plans with appropriate health care professionals as and when they wish Geraint Hughes • Enable online peer support Service Improvement Facilitator, Yorkshire Cancer Network • Allow the patient a degree of choice as regards the nature of follow-up geraint.hughes@ycn.nhs.uk and where tests should be undertaken e.g. GP surgery v hospital. Great Ormond Street Hospital for Children NHS Trust As an additional part of the work focused on making best use of IT; details of the GOSH work in relation to the website can be found in the Care Coordinator (key Economic Evaluation worker) section on page 16. Economic evaluation work has been undertaken as part of an NCSI initiative, being analysed nationally. The purpose of this work, which consists of a case note review and a patient questionnaire, is to enable the NCSI to get a retrospective picture of cancer activity and costs for different tumour types in different parts of the country, and to get the patient view on the cost of attending outpatient clinics and whether they have had issues addressed or unaddressed prior to their current appointment. Analysis is currently being conducted by the Department of Health. Leeds Teaching Hospitals NHS Trust (LTHT) and Birmingham Children’s Hospital NHS Foundation Trust (BCH) in conjunction with Selly Oaks participated in the evaluation. LTHT have undertaken a review of 100 patient case notes and participated in the patient questionnaire with BCH participating in the patient questionnaire cohort. All patients from the BCH cohort were interviewed at Selly Oak clinic. There was a 100% completion rate for all 76 patients who attend. The outcome of this exercise will be used to inform decisions about the way services are provided in the future.
    • Building the evidence: Developing the winning principles for children and young people 33Patient and parent education and psychosocial support1. The Christie Survivorship Programme ‘Good to have an interactive session in which the attendees can participate, discuss, speak their views, be listened to and offeredThe Christie Survivorship Programme project is a new service innovation that aimsto improve information and support for Teenagers and Young Adult (TYA) cancer advice’survivors. Completion of the first two Survivorship Education Courses - Course 1delivered over a period of 8 weeks (one 2-hour session per week) - Course 2 was ‘Love it, really good and useful, always refer to it’changed to be conducted over two Saturdays. Key learning pointsPatient Perspective • The Survivorship Programme aims to provide relevant, sufficient and timely‘The survivorship programme helped me in many ways. Primarily information that will inform, support and empower survivors in relation to manyit gave me a better understanding of what help was available aspects of their lives that have been affected by treatment for cancer. The aim of this is to improve the quality of patient care and self-management.after having cancer, as well as being able to use the folder as a • It is intended that the information given will answer many of the questions thathandbook to refer to short and long-term. It also gave me vital patients have, in an easily accessible interactive forum. This additional method ofcontacts to get in touch with which really helped a lot and on the information provision is used alongside current methods of delivering information in order to improve patient engagement, acceptance, and understanding.whole I think it’s a brilliant idea!’
    • 34 Building the evidence: Developing the winning principles for children and young people • The programme hopes to identify issues and problems that the survivor may Suggestions for the format of the next course included a pre-course social event, encounter, and provides them with the knowledge and resources for resolution or and a residential weekend; currently under discussion. coping strategies. Impact of the improvement Evidence ‘Good to have an interactive session in which the attendees can • Questionnaires are given to each course attendee to assess their course participate, discuss, speak their views, be listened to and offered expectations and their current state of mood, body image, social behaviour, physical activity and any risky behaviour. advice.’ • Geographical location of attendees was markedly different for the two alternative course formats. Course 1 (weekday evenings) had only one out of 12 attendees ‘…hearing that people have similar worries; sharing of anxiety from outside the Greater Manchester boundaries (8%); Course 2 (weekend) had experiences; learning how to combat anxiety with coping and 9 out of 20 attendees from outside the Greater Manchester boundaries (45%). relaxation techniques; knowing that a relaxing environment helps • To ensure effectiveness and appropriateness of the programme we will measure mood and confidence.’ the value of the intervention and ensure there is continuous re-assessment and ongoing refinement. Acknowledgements Ed Smith Particular points of interest Consultant Clinical Oncologist, The Christie NHS Foundation Trust Attendees found the Late Effects of treatment session very useful because it gave ed.smith@christie.nhs.uk them ‘Advice on what to do after treatment and explanations to the different symptoms that can occur’ and ‘What to look out for later on in life’. Andrea Slater Session and speaker evaluations of the first two courses are very positive so far. The Project Manager - Survivorship Programme, steering group met on 13 July, and the following points were discussed: Young Oncology Unit, The Christie NHS Foundation Trust andrea.slater@christie.nhs.uk • All session feedback from the attendees and speakers is important to the development of the programme and future changes should always be according Significant contribution from the following: Representatives of the Christie Crew to the requirements of the survivors and members of the Christie Test Site Steering Group. • We need to listen to what they want from the course, what works well and what needs improving. Some elements of the course need more discussion and 2. Cambridge Exercise Programme consideration as to how they can best provide the information the young people need, with an approach that they will find useful, interesting and they can Helen Hatcher has led a piece of work to establish how patients manage fatigue engage in better and improve their exercise tolerance, with the aim of improving the physical • The evaluation comments will be taken into consideration for all sessions in order functioning and mental wellbeing of young adult cancer patients and survivors. to make these improvements. This project addresses issues within the National Cancer Survivorship Initiative Sessions have to be generalised and we cannot answer all individual concerns and (NCSI), Children and Young People Improving Outcomes Guidance (CYP IOG) questions in the time available. The expectations of the attendees may be too high? (2005) and Cancer Reform Strategy (Dec 2007) in enabling patients to return to an The Young Oncology Unit (YOU) patient support network already covers many effective quality of life after treatment for cancer. It also relates to the rehabilitation aspects of the course to a certain point. Nutrition, benefits, etc. may be very needs of young people (within the CYP IOG) as it addresses specific needs of relevant to include in a programme for other hospitals that do not have the different groups of patients, particularly those with complex needs such as those expertise and support network that we have on the YOU. surviving after treatment for brain tumours.
    • Building the evidence: Developing the winning principles for children and young people 35This work is of particular interest nationally because of the potential to improve the Evidencephysical and mental wellbeing of cancer survivors. Novel ways of assessing fatigue and individualising its management were utilised. Fatigue was assessed using two score systems, one a visual analogue score and thePatient perspective other a score which has been documented to be useful in assessing cancer related‘I can hardly move without getting breathless, but I used to be fatigue.really fit. I need to know what I can do to get better.’ This new media form of exercise instruction can be tailored to individual needs - improves fitness, allows young adults to spend more time in education as manage‘My mum did not want me to do anything because she thought it fatigue better, which in turn prevents problems associated with fatigue and nowould tire me out. My doctor was good, though, and explained exercise (such as school attendance or obesity).how exercise will keep me fit and help me afterwards, so I can go The young people who attended the workshops in 2009 all reported better levels ofto the gym now without her worrying.’ functioning when asked in 2010 (even though they still experienced problems with fatigue). The workshop was assessed with a feedback form immediately afterwards‘I don’t know how to fit in schoolwork with friends or family stuff. and then six months later. The workshop was rated on a scale from one to five, where five was excellent. It was completed by patients and some carers/families.Each week is different, so I don’t know how to deal with it. The The average score was 4.5/5 from patients and parents immediately after thefatigue gets in the way of everything.’ workshop. For those who have had the opportunity to come back six months later all felt it had had some impact on their lives. Not all had noticed a significant‘I am so glad we came to the workshop. My daughter has been improvement in fatigue but all were able to do more on a daily basis (from the visual analogue score and verbal description of weekly activity compared with atreally affected by the chemo but was not sure what to do and baseline).thought she was the only one feeling like this. Now we have someideas to try to help her.’ Baseline assessment showed no exercise initiatives with many patients asking for help. This was undertaken after a clinic appointment for those in adult services byKey learning points either a physiotherapist or doctor. It was based on simple questions of ‘Were youFatigue workshops were developed after a pilot workshop in 2008 which was given any information on what exercise you could do during your treatment and ifpopular and had excellent feedback. Following further user involvement groups, it so what was that?’ ‘Would you like any further information on exercise during yourwas clear that an exercise strategy tailored to the individual was needed and that a treatment?’. Of the 30 patients asked 50% did not remember receiving anyDVD/media application was most likely to appeal to the age group. At present, the information, 35% were told to rest, and only 15% were advised to continuefatigue workshops are run on Saturdays with the voluntary help of a doctor, young exercising. All but one of the patients wanted more information about exercise. In aadult survivor and another (nurse/activities coordinator). smaller group of six young adults, all wanted to have information about what activities they could and could not do.In process is the development of an exercise DVD to promote exercise in patientsand survivors. DVD has required a set-up cost to film, edit and produce. The At a user involvement meeting all those present said they wanted tailored exercisecontent of the DVD was discussed with young people, and also with programmes that were specific to them, bearing in mind they may be limited byphysiotherapists who treat this age group of cancer survivors, and clinicians chronic illness, balance problems or limb problems. Those who had attended theinvolved in their care. workshops felt they had a better understanding of what they could and could not do. More specific programmes are being developed alongside the DVD which will show details for people with specific issues.
    • 36 Building the evidence: Developing the winning principles for children and young people Particular points of interest Helen Love • Fatigue workshops need people trained in mental and physical approaches to Consultant Physiotherapist management of fatigue. We have to be aware that at any time the workshop helen.love@addenbrookes.nhs.uk participants/families/carers will require support or counselling for issues which arise related to how fatigue affects their everyday life Karen Sherbourne • Small groups with at least one long-term survivor who has learnt fatigue Nurse Consultant management strategies for themselves greatly assists the facilitation of the karen.sherbourne@addenbrookes.nhs.uk sessions • The involvement of physios/personal trainers is also helpful. 3. Fertility Assessment in cancer patients and survivors (Cambridge) Challenges The aim of this project is to assess the impact of assessment of fertility service Pitfalls are the inevitable times young people become upset when discussing how provision and determination of how this could be improved based on questionnaire, much their treatment/cancer has affected their life. user involvement group discussion, and assessment of how the service is provided; also, to improve the information to young people so that they are better informed Tailored (individual) physical care plans for each patient supplemented with the DVD about their future fertility. which will point them to their correct exercise regime (which may change throughout and after their treatment). In the future we will have produced a leaflet All patients undergoing treatment for cancer should have accurate information and a DVD which can be distributed to other providers. about how it will affect their fertility and what options are open to them. This testing, as well as late effects testing, will give an indication of numbers of patients Impact of the improvement who may require fertility services in the future, or counselling for loss of fertility. There is an understanding that these patients require rehab after their treatment. Providing a good robust service at the time of treatment should reduce later costs, From the workshops we have held to date the feedback from patients is that they and having a late effects fertility clinic should centralise the service to streamline felt better equipped to deal with fatigue if discussed during treatment. Those who care for cancer survivors in an environment that recognises they are different from attended the workshops after treatment said they wished they had found out those some other users of fertility services. facts during treatment and wondered if they would have managed better. We will be trying to specifically ask about this after the workshops and compare the fatigue Patient perspective scores of the two groups at comparable times after treatment. The DVD will be a When patients were asked: Would you like to know more about your fertility now one-off cost. The fatigue workshops, if effective in showing an average or in the future? improvement in fatigue scores and activity levels, could be brought into mainstream care during and after treatment e.g. in a late effects group. If we can show that One patient replied: ‘Definitely – as it is important to me to know all the options patients who attended these have a better outcome (return to education/work and have clear facts.’ which can be assessed at a follow-up appointment by a member of the TYA team) they should be adopted for all patients. Key learning points • To safely provide fertility information and fertility preserving treatments where Acknowledgements possible to all young people undergoing treatment for cancer Helen Hatcher • Reviewed fertility discussions and referrals to fertility services in the acute setting Consultant in Medical and TYA Oncology • Discussed with young people what they wanted from late effects fertility service Addenbrooke’s, Cambridge • It was apparent that young women 14-16 had fewer options than those over 16. hh321@medschl.cam.ac.uk Some patients did not have fertility preservation measures (some due to choice, others due to information not given).
    • Building the evidence: Developing the winning principles for children and young people 37Evidence• Feedback at the user involvement group suggests those treated more recently Productivity have been given better information • The aim is to improved fertility outcomes which will reduce later costs of• General comments made at user involvement group which impact on which staff alternative fertility treatments or counselling required from inability to should be involved and the training they should have (fertility, TYAC specific and conceive. communication skills pertinent to TYA)• Baseline assessment showed that 35% patients did not receive sperm banking or information about fertility preservation. Many of these were under 16 as it was felt that they were either were too immature to produce sperm or discuss Prevention options. For young women there were often thought to be no options (13-16). • Prevention of infertility or at least prevention of lack of knowledge about• After a discussion within the TYA MDT forum a renewal to commit to the joint fertility risks and later reassessments which may be possible. college guidelines was made, as well as newer techniques discussed• A repeat assessment is now underway to see if more patients are being given more options• Considerations to be taken into account include the range of knowledge or Particular points of interest memory that some have about their fertility discussions which often take place in • Peer support as evidenced in the user involvement group again showed how this an acute setting-at the focus group it was clear that this information was often topic is a central one to young people’s needs. The user involvement group made forgotten with everything else discussed and that the need to discuss it came them realise what could be done and how it has affected others. It would be a later during or after the treatment had finished. good topic for support groups but we note that it is definitely better to divide the age groups for this; many younger teenagers do not consider the same thingsOutcomes related to QIPP associated with a relationship and fertility as those in their late teens or early 20s • The aim is to improve fertility outcomes which will reduce later costs of alternative fertility treatments or counselling required from inability to conceive • Prevention of infertility or at least prevention of lack of knowledge about fertility Quality risks and later reassessments which may be possible • To safely provide fertility information and fertility preserving treatments • There is currently a reassessment of fertility concordance with joint college where possible to all young people undergoing treatment for cancer. guidance underway after information campaign. Impact of the improvement • New information sheets are being designed and TYA staff trained to discuss Innovation fertility options when primary caregiver did not feel able to provide this • First assessment for young people based on joint college recommendations • Fertility discussion documentation is now part of MDT discussion for all TYA • Novel fertility preserving strategies being developed (ovarian transposition) patients (14-24) are now in regular use. There is currently a reassessment of fertility • First assessment for young people based on joint college recommendations concordance with joint college guidance underway after information • Novel fertility preserving strategies being developed (ovarian transposition) now in campaign regular use • Assessment of needs for fertility information based on young people’s requests rather than physician directed.
    • 38 Building the evidence: Developing the winning principles for children and young people • Assessment of needs for fertility information based on young people’s requests rather than physician-directed • A late effects fertility clinic is also being established and some information is to be put on the website about retesting sperm, and other options if you remain infertile (at young people’s request). Challenges Pitfalls include upsetting those who did not realise their treatment would have this effect. For some, counselling was needed to resolve issues concerning both fertility and the general way cancer and its treatment had affected their life. Long-term gains Late effects fertility clinic. Better information about certain aspects of fertility management. Link on website to fertility issues and fertility late effects. Acknowledgements Helen Hatcher Consultant in Medical and TYA Oncology Addenbrooke’s, Cambridge hh321@medschl.cam.ac.uk Laura Abbas The young adult in charge of the project. Sarah Smith The TYA CNS assigned to this project.
    • Building the evidence: Developing the winning principles for children and young people 39Continuation of aftercare/models of care (follow-up and review of care plan)A number of tests sites across CYP are testing models of care. These models of care 1. Birmingham Children’s Hospitalinclude shared care, long-term follow-up clinics, clinical nurse specialist led clinics,GP follow-up, telephone follow-up and postal follow-up. The Birmingham project involves the stratification of patients into risk groups and subsequent allocation to the most appropriate long-term follow-up model with theThe following CYP test sites have explored the different models of care: development of three models of long-term follow-up:• Birmingham Children’s Hospital • Postal survey In conjunction with the West Midlands Regional Children’s Tumour• Brighton and Sussex University Hospital Registry• Royal Marsden, London • Nurse-led follow-up clinics - Run in parallel with medical long-term follow-up• Bristol and the Peninsula. clinics, for medium risk patient • Medical follow-up clinics - A development of current practice to allow consultant-This section does not include transition models of care; details of this work can be led follow-up for patients predicted to have the greatest need.found on page 45. Postal follow-up There have been four patients discharged onto the postal follow-up from BCH since July 2009 and 92 from Adult SOH from Selly Oak. A questionnaire has been developed and is due to be distributed in September to identify whether the patients were happy with the discharge process and if they felt they had sufficient information, support and guidance. This evidence will not be available until late 2010.
    • 40 Building the evidence: Developing the winning principles for children and young people Nurse led clinic The main innovation for the project is not just the local provision of care closer to The nurse led clinic began in mid September 2009, and has been operating on the patient’s home, but the flexibility of what the consultants have attempted to Wednesday afternoons each week with haematology patients. There have been a provide. The reflection that has taken place by the clinicians at each clinic about total of 34 new patients seen during this period (with only two DNAs). There have how they have provided this local service has affected how they will proceed in also been four patients return for a second appointment during this time period. subsequent clinics and the way in which they treat their current patients. The To gather evidence/feedback from this clinic has proved difficult at times and a patient interviews have shown that the local model with both children and adult number of different methodologies have been tested. We initially gave the services can provide flexible care for patients, which was the stated aim of this questionnaires to the patients to complete immediately after the appointment project. (seven patients did this). However, it was felt that by doing this the patients may not feel they could be as open and honest as they would like to be, given the nurse Through patient interviews, a third of patients have expressed a view that they that saw them was handing out the questionnaire and collecting it back. We then would like the opportunity to talk to someone about issues other than their tried handing it to them after the appointment and asking them to post it back - immediate health needs. An attempt to measure a gap in need was attempted two were returned this way. through conducting the questionnaire. 47% (15) expressed concern about depression, feeling different or difficulty with relationships. 21% had concerns In February 2010 we then sent the questionnaire out by post the week after their about their weight – either under of over, and how this affects the way they feel appointment, giving the patient/parent some thinking time. Again only two were about themselves. However, without a control group we are uncertain as to returned this way; 11 were completed by telephone interviews. Three were whether this would be similar for any group of teenagers and young adults. completed during a one-to-one with the patient/parent or guardian after the appointment in clinic. We are hoping to show that repatriating RMH patients to Brighton will reduce costs. That some GOSH patients can be seen in the adult clinics which will reduce The feedback from the Birmingham nurse led clinic overall was very positive. It is the number of shared care clinics and make considerable savings. That seeing anticipated that the clinic will continue to operate for haematology patients and be patients in a specialist Late Effects long-term follow-up clinic will ultimately reduce offered in the near future to oncology patients also. inappropriate use of other resources because signposting will be timely and effective. This evidence needs to be collected longer term as the timescale of the project is too short to measure this effect when patients only attend annually. 2. Brighton and Sussex University Hospitals NHS Trust The qualitative evidence from the interviews is powerful and the reduction in cost to Brighton and Sussex University Hospitals NHS Trust (BSUH) are testing a patients by 70% in financial terms and the softer benefits of not missing school are multidisciplinary long-term follow-up ‘model of care’ to achieve smooth transition considerable. from paediatric to adult services structured by age. The model will be evaluated with the Royal Marsden (used as a baseline model) and the University Hospitals Bristol NHS Foundaton Trust (HUB and spoke shared care model of care). BSUH had established a local model of long-term follow-up for childhood cancer survivors. All long-term follow-up has traditionally taken place at the Principal Treatment Centres and this work has established two new clinics in the Royal Alexandra Children’s Hospital that take place with a consultant from the RMH in attendance, along with a paediatrician from the RACH.
    • Building the evidence: Developing the winning principles for children and young people 413. The Royal Marsden NHS Foundation Trust 4. Bristol and PeninsulaThe Royal Marsden NHS Foundation Trust are evaluating their current late effects The Bristol project is exploring models (hub and spoke) of care for young adultfollow-up service and the benefits of introducing a Clinical Nurse Specialist (CNS) to survivors shared with secondary care, but there are aspects which also address thethis service. This baseline will provide a comparison for the Brighton project. need for continuity of follow-up for survivors, transition to adult services and survivor care plans.Service evaluationFrom analysis of the qualitative data obtained, the primary negative issues in the The Bristol Survivor questionnaire identified the top five responses to questionslong-term follow-up service highlighted in this service evaluation were: about health problems or other issues that survivors indicated they would like to discuss or receive information about were (in order of frequency):• Provision of age-appropriate facilities and care• Management of the process of moving to adult services • Psychological / emotional issues• Quality of information-giving • Fertility• Ease of navigating the physical environment of the hospital. • Physical issues • Diet and exerciseComments described instances of young people not feeling treated in a manner • Information about previous treatment.appropriate to their age and this was reflected in the physical clinic environment,which is perceived to be geared towards younger children. Professional Survey results identified the professionals’ consensus view supported:The new Children and Young People’s Unit currently under construction at the Royal • The need for treatment summariesMarsden, Sutton site includes a new dedicated environment for teenagers and • Use of care plansyoung adults. This is being developed in collaboration with the Teenage Cancer • A risk based plan for follow-up following assessment in a specialistTrust, a charity with expertise in the specific needs of this age-group, to ensure that survivorship clinicthe facilities are age-appropriate. • Open access for survivors to continue to obtain expert advice.The clinical nurse specialist will establish a transition clinic for this age group to and recognised that:support patients up until transfer to adult services. The post-holder will focus onpsychosocial issues, as well as health issues. A new paediatric psychosocial • No assumption should be made about knowledge of potential late effects madescreening tool, which is being developed and tested in the second strand of our available to survivors by parentsCYP workstream, will be used by the clinical nurse specialist to facilitate this • The professionals did not confidently support the statement that ‘It is safe andprocess. Detecting psychosocial issues earlier, in order to offer appropriate support, effective to offer survivorship care in a shared care setting’, this clearly requireswill enable patients in this age group to deal more effectively with the major life further analysis and from initial discussions it would appear that there arechanges that accompany this period of life, including a greater ability to manage different definitions of the term ‘shared care.’their health.
    • 42 Building the evidence: Developing the winning principles for children and young people Geographic analysis The patient interviews also show that the model of care for both children and adult The data show that a step wise improvement in (reducing) travel times can be services can provide flexible care for patients. Some young adults under 18 have obtained by increasing the number of sites at which survivorship clinics are provided expressed a strong preference to be seen in an adult setting. but: ‘I don’t want to sit in a waiting room with all those • Only a three centre (or greater) model for the delivery of care would meet the babies looking at me.’ majority of patients’ expectations to travel less than 60 minutes to access a 17-year- old girl. suitable clinic • There is no clear advantage of a five site model over a four site model. Alternatively, there are some young adults where the move at 18 to an adult service would be inappropriate and they can continue to be seen at the Children’s Hospital. The project is currently in a data-gathering phase and it is during the next phase i.e. Design, that the findings to date will be translated into requirements for the new Communication breakdown is a common theme across the test sites: service. It is these requirements that will then be assessed/mapped against the QIPP criteria plus other standard prioritisation criteria e.g. MoSCoW (Must Do, Should ‘I often felt unsure who to go to after my treatment finished…GP Do, Could Do, Would Do) to ensure that all agreed/essential components are thinks I should go to specialist and specialist says I can go to GP.’ included in the pilot phase. Overall key learning points Examples of patients’ perspective The following are common themes identified through our the testing at the models Patients from Brighton had to travel long distances for their long-term follow-up of care test sites: care. The concern for the clinicians was that patients would DNA and be lost to • Age appropriate facilities and care, particularly for the teenage and young follow-up because of travel and time costs. The families of children and young people age group adults with special needs and disabilities as a result of their cancer of treatment find • Transfer between models of follow-up of care determined by clinical need and the travel costs and disruption onerous. maintained through robust mechanisms of follow-up care appropriate to the long-term health needs of the patient A number of the young people interviewed at the Brighton test site liked being • Quality of information is an important function of change management in the seen closer to home because they did not have to miss so much school/college. patient pathway. Importance of communication between care providers has also been identified. ‘Coming here make it easier because I can go back to college after • Patient /parent involvement in the development of their individual care pathway the clinic. When I go to the Marsden it takes all day.’ • Clinical nurse specialist roles integral to the support required for late effects service 17-year-old boy. • Patient becoming ‘lost to follow-up.’ ‘I like coming here but you could do with some sweet machines – it’s better for dad because he gets REALLY STRESSED going to the Marsden as he doesn’t drive.’ 11-year- old boy.
    • Building the evidence: Developing the winning principles for children and young people 43Overall evidence Acknowledgements• Benefits to patients are being measured across these test sites, using clinic data, Helen Jenkinson clinic value audit, case note reviews, patient satisfaction survey, focus groups, Consultant Paediatric Oncologist, face-to-face interviews and demographic data Birmingham Childrens Hospital NHS Foundation Trust• Patient choice and appropriate setting of care needs are measured using clinic helen.jenkinson@bch.nhs.uk value audit, patient interviews, and also evidenced by three tier model of care, number of patients transferring through tiers, patient case study, and interviews Anne Davidson• Learning diaries have been utilised by clinicians conducting follow-up clinics Consultant Paediatrician with an interest in Oncology, (Brighton). Royal Alexandra Childrens Hospital, Brighton anne.davidson@bsuh.nhs.ukParticular points of interestThere are a number of benefits to the patients, these include identifying issues Fiona Wookeyimportant to the survivors, not having to make unnecessary trips to hospital, being Service Improvement Team, Brighton and Sussex University Hospitals NHS Trustseen closer to home, being seen away from the treatment clinic, valuing the fiona.wookey@bsuh.nhs.ukpatients’ time, improving the patients’ experience, quieter clinics with longerappointment slots with CNS, where increased availability for patient psychosocial Mary Tajneeds to be met. Benefits to remove unnecessary trips to hospital will also value Consultant Paediatric Oncologist, The Royal Marsden NHS Foundation Trustcarers’ time and improve the carers’ experience. mary.taj@icr.ac.uk Mike StevensOther patient benefits include choice for patients; variety in FU models of care CLIC Professor of Paediatric Oncology, University of Bristolworks towards ensuring care is being offered in the most appropriate setting and m.stevens@bristol.ac.ukenables patients to make choices about their care as they see fit, by offeringadditional options should hospital based follow-up no longer be an option for Paul Beynonthem. Project Implementation Officer, Institute of Child Life & Health, University Hospitals Bristol NHS Foundation TrustThe PCTs will benefit in two ways - higher quality discharge information benefits GP, paul.beynon@uhbristol.nhs.ukproviding them with significant education surrounding their patient and patientconsent obtained in all cases prior to FU will enable increased communications Sarah Tranterbetween primary and secondary care. Consent enables late effects team to call Service Improvement Facilitator, Pan Birmingham Cancer Networkback patients if late effects or early signs of recurrence are suspected from postal sarah.tranter@westmidlands.nhs.ukfollow-up or nurse-led clinic. Shyama PersaudThe benefits to the cancer centre include additional capacity due to the expansion Project Co-ordinator, Late Effects Team, Children’s Department,of the scope of the CNS, separation of follow-up and treatment clinics, utilisation of The Royal Marsden NHS Foundation Trusta database as a method of long-term follow-up and consent provides contact with shyama.persaud@rmh.nhs.ukhigher number of patients, reducing numbers lost to follow-up.
    • 44 Building the evidence: Developing the winning principles for children and young people Continuing sections of the pathway • Automated surveillance system by hub Principal Treatment Centre (PTC) (Specifically relevant to teenage and young adults, levels 1 and 2, supported self management and planned coordinated care pathway) • Rapid re-entry at any point along the pathway • Test and review outpatient department (OPD) • Multidisciplinary team (MDT) review • Refer to palliative care team. In relation to rapid re-entry, this will be the responsibility of the respective care coordinator (key worker). In terms of automated surveillance system via hub Principal Treatment Centres, test and review outpatient department, multidisciplinary team review and refer to palliative care team – there is ongoing discussion as part of the consultation exercise in relation to the patient pathways to work through these particular issues and make recommendations at a later date.
    • Building the evidence: Developing the winning principles for children and young people 45TransitionTransition at different stages and different ages Where we have been able to, we have included qualitative comments about the experience of transition.IntroductionThe importance of transition at all stages of the patient pathway cannot be over- Patient perspectiveemphasised. Planned and informed transition is essential to ensure the continuity ‘The relationship with the doctor that looked after our child is veryof quality of care for all patients, as each individual patient transfers from paediatric important. Overlap of doctors is important to transfer thatto young person to adult services, and from one stage of their disease to another.Transition aims to address young peoples’ need for healthcare information and relationship.’support at a critical stage in their development as they move from paediatric toadult healthcare. There is documented evidence that transitional care is necessary ‘I have attended a children’s hospital for 12 years so now perhapsfor young adults with chronic disease originating in childhood1, 2, 3, 4 and it appliesequally to CYP cancer survivors. an adult hospital. I will benefit now I am becoming an adult.’ The following CYP test sites have featured an element of transition as part of theirTo try to encapsulate the key learning from across all CYP test sites, the following overall activity, some as a main focus of work such as GOSH, where it was formallysection has been drawn together by our CYP evaluation team to present an evaluated, whereas for others it was an element embedded within a model of careoverview of the issues relating to transition in different geographical localities, and with questions regarding its benefit interwoven with questions around experiencein relation to different foci of testing. Transition themes have therefore been of care, such as Brighton.extracted, mainly from questionnaires undertaken at some of the test sites. The aimof this part of the evaluation stream of work was to look across test site activity forconsistent themes that add to a story about transition, from the perspective ofthose receiving and delivering this important element of a model of care.
    • 46 Building the evidence: Developing the winning principles for children and young people Great Ormond Street Hospital for Children (GOSH) The recommendations to the commissioners regarding key components of an GOSH has been holding a transition clinic led by the clinical nurse specialist for the effective transition service are: last two years, preparing children for the transition to adult care. Transition prepares 1. Investigate development of a ‘transition’ package including e.g. verbal and them for transfer to an adult hospital setting or to GP care at appropriate age. written, information, photos, in conjunction with service users; this could include a group visit to the adult clinic. The Royal Marsden Hospital 2. Undertake health needs assessment and post-treatment summary and action The Royal Marsden Hospital is planning to implement a transition clinic once a CNS plan, linked into network model. LTFU nurse is in post. 3. Adopt text reminder service to reduce DNA. 4. Ensure the clinical environment is age appropriate and reflects service users’ Sheffield Children’s Hospital needs. In 1989 a formal late effects service commenced, led by a consultant paediatric endocrinologist. This further evolved in 1996 with the appointment of a dual Throughout the sites the same theme was illustrated: qualified paediatric oncologist /endocrinologist/late effects consultant. It was at this RMH ‘Our aim is that through implementing measures geared towards transition, time that a collaborative clinic was born in the adult trust (Royal Hallamshire young adults will better understand the relevance of ongoing follow-up, gaining Hospital) between the paediatric oncologist and adult medical physicians with an greater awareness of their health and feeling better able to take ownership of it.’ interest in LE. In Bristol, it was identified that about half of the survivors were still being seen by Birmingham Children’s Hospital the paediatric team (note: median age of responders = 26 years). Comments In September 2009, a nurse led clinic was set up within BCH for haematology illustrated the need for transition and long-term follow-up clinics: patients only. This clinic runs in parallel with medical long-term follow-up. ‘Stop telling me I have no health care needs now I am cured. I feel Brighton and Sussex University Hospital I have ongoing problems that result from my cancer treatment…’ A BSUH paediatrician and adult endocrinologist/haematologist established a joint clinic to review long-term follow-up patients. They have worked together with a In the Bristol Survivor Questionnaire, the top five responses to questions about clinician from the Royal Marsden Hospital. health problems or other issues that survivors indicated they would like to discuss or receive information about were (in order of frequency): Bristol Children’s Hospital 1. Psychological / emotional issues There is a designated clinic for young adults, transition into adult services remains a 2. Fertility challenge and when achieved this is usually in relation to one component of care 3. Physical issues (e.g. endocrinology). 4. Diet and exercise 5. Information about previous treatment. Particular points of interest In Sheffield the main findings were: These themes are the basis of established transition clinics namely at GOSH. 1. Patients wanted more information on the hospital and transition process. 2. Verbal information was found most helpful in the transition process. 3. Identification of key workers was not known to the patient. 4. Text reminders for clinic appointments would be helpful. 5. The physical environment and décor of the outpatient setting is important to the patient.
    • Building the evidence: Developing the winning principles for children and young people 47Quality InnovationThroughout the test sites ‘an improved patient experience’ was highlighted. • At Great Ormond Street Hospital, transition provides a new value adding• At Great Ormond Street Hospital ‘transition is able to provide improved intervention in the survivor’s journey in living with and beyond cancer. A patient experience by preparing survivor for a new phase in their timely information resource is made available directly to young people, survivorship journey. Transition provides the impetus to a degree of self- leading to empowerment and facilitating self-management as far as management, yet provides a safe loop of return to LTFU if need arises’ possible• At The Royal Marsden Hospital ‘the CNS will also set up and run • At The Royal Marsden Hospital, a new Children and Young People’s transition clinics for patients within two years of transfer to young adult Cancer Centre will open in May 2011. This will include the provision of services to ensure the process runs smoothly, keeping them informed and dedicated facilities for teenagers and young adults. This is being developed supported in the lead up to and during this change.’ The CNS will provide in collaboration with the Teenage Cancer Trust, a charity with expertise in support geared towards the specific needs of teenagers approaching the specific needs of this age group. A CNS is going to be employed to lead transfer to external adult services at age 18, ensuring this process occurs on a transition clinic. smoothly and that patients are adequately prepared• In Bristol, the project will build on the experiences gained from a designated young adult follow-up service already running in Bristol where a separate clinic is open to all patients aged over 16 years of age, over fiver Productivity years from diagnosis and at least three years from last treatment. At the first • Increased efficiency, better use of clinical time and scheduling visit all survivors are offered an individualised assessment of risk and • Informed commissioners were identified from responses collated at recommended investigations in the context of an education programme to Sheffield. provide appropriate information about the value of continuing follow-up. On this basis, survivors are offered an opportunity to continue follow-up in the young adult survivor clinic; be transferred to their GP or to another appropriate physician; or to be discharged from further review with Prevention the opportunity to contribute to an intended postal follow-up system. An Throughout the sites, optimum health promotion within the transition clinics important aspect of the existing clinic is the role played by the nurse has led to the following: specialist who sees patients individually, provides healthy life style advice, • At Great Ormond Street Hospital, there is evidence from the survey that and monitors compliance with appointments for other investigations, some have adopted healthy lifestyle promoted during transition medication, etc. • At Sheffield Children’s Hospital, early identification and intervention for• Sheffield Children’s Hospital has documented: Increased efficiency, late effects of cancer treatment have been identified, by having a service improved patient experience, better communication between patient and user focused transition service. provider and a consistent approach to late effects care. Also an increase in health education and self-awareness in patients• In Brighton, a transition clinic, joint with RMH supports the development of a relationship with staff at a new service.• In Birmingham, patient benefits from choice. Higher quality discharge supports transition between services, information benefits GPs, providing them with significant education in relation to their patient, in addition to an overall increased communication between primary and secondary care.
    • 48 Building the evidence: Developing the winning principles for children and young people Evaluation of the effects of changes It was highlighted in Brighton how a cancer diagnosis in adolescence can effectively Great Ormond Street Hospital have undertaken a formal evaluation of their ‘arrest’ normal emotional maturation and that we need to be sensitive to this when transition programme. The majority of survivors who have had transition planning transition. One young man (18 and a half) who was attending on his own appointments [n=120] are satisfied with preparation of transfer to adult setting and without his parents for the first time told us how he felt he needed to understand with the information provided. his treatment and subsequent problems for himself although he had previously been happy for his parents to be in control: The changes have addressed some of the culture shifts as described in the NCSI vision document, namely: ‘Iwas treated as an adult at the beginning. I remember my mum telling that I would need ‘special treatment’ but she hadn’t used 1. The focus on recovery, health and well-being after cancer treatment: helps to prepare young people for the next phase in their life, by understanding how the word cancer and then I went to this specialist adult centre and having had cancer continues to affect their lives. they told me I could die and I had cancer. Then I was referred to 2. Assessment, information provision and care planning: since November 2009 a the Royal Marsden children’s centre and I liked being in a care plan and treatment summary record have been given out. 3. Supported self-management: a focus in the clinic is on health promotion and children’s hospital’. making health choices. The Royal Marsden Hospital commenting on transfer to adult services (transition): 4. A shift from a single model to tailored support of follow-up care: the delivery by As observed by the project co-ordinator, difficulties experienced with transition were one CNS has meant that care can be individualised through knowledge of the as much in evidence during clinic sessions as they were demonstrated by the service young person and an evolving ongoing relationship. evaluation data. Often the issue of transfer proved to be as problematic for their 5. A shift from measuring clinical activity to experience and outcomes for survivors: parents as the patients. During face-to-face interviews, when directing questions to the focus is on what is important for the young person at that time, taking time patients of transition age (18 years and above), there were many instances when to understand what is going on in their life and what support might be needed. parents responded for them. Great Ormond Stret Hospital has always ensured that transition is an integral part of LTFU and can be regarded as an ongoing process rather than a final ad The introduction of a clinicalnurse specialist will play a key role in improving the hoc appointment clinic before discharge to an adult setting. management of change at this stage of the patient pathway. Transfer to adult services (transition) will be a primary area of focus. The clinical nurse specialist will Other sources of evidence establish a transition clinic to facilitate the process. This could usefully encourage Stressed throughout the report from GOSH is the resources needed to run a older patients to develop greater ownership of their health and potentially greater successful transition clinic. The evidence points to the need for two transition points autonomy from their parents, so that they are better able to cope with the instead of one, one when transitioning into follow-up care, and one in preparation differences in approach to clinical care in adult services. for transition to adult services. It is also hoped that a relatively high DNA rate in the Young Adult Clinic at St At GOSH, the evidence shows that CYP transition service contributes positively George’s Hospital, the primary referral site for our transition patients, will be during transfer from a children’s environment to an adult setting. It prepares and addressed by the attendance of our CNS at this clinic. This will provide continuity helps survivors negotiate future health needs of living with and beyond cancer. of care and the establishment of a surveillance framework in the initial stages of transfer, in order to reduce the DNA rate and prevent patients becoming lost to follow-up.
    • Building the evidence: Developing the winning principles for children and young people 49Similarly, some positive feedback demonstrated resistance to the notion of changes Acknowledgementto improve services. These factors, coupled with the issues relating to changes in Susan Mehtapatient care, point towards a need for careful handling, including effective Clinical Nurse Specialist Long-Term Follow-Up,communication, of any disruptions to continuity in patients’ care and preparation and National Clinical Advisor (CYP Survivorship Initiative)for moving on. mehtas@gosh.nhs.ukPotential top tipsSheffield reported that there are a number of issues to consider when implementing Referencesa workable, successful model of transition of care. One such consideration is the 1. Department of Health (2006) Transition: getting it right for young people: improving the transition of young people with long-term conditions from childrens to adult health services.differences in the clinical characteristics of the paediatric setting and adult setting. 2. Department of Health (2008) Transition: moving on well (Gateway reference 8651).The young person will move from an environment that is nurturing and prescriptive 3. Royal College of Nursing (2004) Adolescent transition care: guidance for nursing staff. London:in its delivery of follow-up care to one that liberates the young person through RCN people with long-term conditions (Gateway reference 5914).them taking charge (in conjunction with the clinician) of the future of their care5. 4. Royal College of Nursing (2008) Lost in transition. London: RCN.How theses issues are approached may influence areas of the transition process 5. Freyer DR, Kibrick-Lazear R (2006) In sickness and in health: transition of cancer-related care forsuch as communication and information pathways. It is imperative that those older adolescents and young adults. Cancer 107: 1702-9.involved in the follow-up care of the young person consider that the timing of thetransition is crucial in ensuring that the young person does not feel puerile orfrustrated. Therefore, transition needs to emulate the process of ‘life transition’with increasing onus being put on the young person to be responsible for healthsurveillance. Through early preparation of young people for this transition with thegradual introduction of adult oncologists (perhaps at the children’s hospital) beingsooner rather than later. This would serve to build confidence in the young personthat adult oncologists are just as knowledgeable and capable of providing effectiveand adequate follow-up care.Throughout the sites, the transition service contributes positively during transferfrom a child environment to an adult setting. It prepares and helps survivorsnegotiate future health needs of living with and beyond cancer. It providesincreased efficiency, improved patient experience, better communication betweenpatient and provider and a consistent approach to late effects care. It also promoteshealth education and self-awareness in patients.Plans for long-term gainsAny future model of care should include an element of responsive evaluation of thepatient experience of transition, so that services can continue to be shaped aroundpatient need.This summary has been provided by the CYP Evaluation Team, led by ProfessorFaith Gibson.
    • 50 Building the evidence: Developing the winning principles for children and young people Cross cutting themes The CYP workstream includes the following cross 1 Equality Great Ormond Street Hospital for cutting areas of work – this section provides an Children NHS Trust update on each of these strands: Equality is of importance nationally, and has • Transition – timing of transition is flexible been a priority area for all of our CYP test sites. dependent on individual circumstances of the 1. Equality The following is an extract of issues that need to survivor 2. Evaluation summary be addressed to ensure equality across all • Interpreters used in transition clinic as required. 3. Evidence review services and all patients. This is a fundamental 4. Identifying core competencies required requirement for all healthcare provision. Cambridge Exercise Programme by nurses One major factor was the fitness of the 5. Lost to follow-up (Birmingham and Brighton and Sussex University individual (bed bound, amputation, brain Andy Toogood work) Hospitals NHS Trust surgery) which is what led us to produce a DVD 6. Pan Thames shared care long-term Low income groups and the disabled travelling tailored to each area to prevent inequality. follow-up to London can cause significant difficulties. It is 7. The non-clinical policy project work hoped that providing a service closer to home Cambridge Fertility (CLIC Sargent). will assist these groups in particular. It was apparent that young women 14-16 had fewer options than those over 16. Some patients ‘I like coming here but you could do did not have fertility preservation measures with some sweet machines – it’s better (some due to choice, others due to information not given). for dad because he gets REALLY STRESSED going to the Marsden as he New information sheets are being designed and doesn’t drive.’ TYA staff trained to discuss fertility options when primary caregiver did not feel able to provide 11-year-old boy. this. Two patients with learning difficulties were Fertility discussion documentation is now part of brought to clinic by social service carers and they multidisciplinary team discussion for all TYA said that coming to the RACH was easier for patients (14-24). their service and also that the parents were more likely to come to the clinic as well because taking morning off work was more acceptable than having to take the whole day.
    • Building the evidence: Developing the winning principles for children and young people 51 2 Evaluation Summary • The specific evaluation of three distinct Both the model and method will emerge from a elements of the CYP programme have already synthesis of CYP test site evaluation alreadyIt is a fundamental requirement for the CYP been described: developed by local teams, in order to identifyworkstream to provide evidence as part of the • Care plans (a number of sites involved) gaps and additional evaluation required. Anoverall findings and recommendations that must • IT portal (Leeds) appropriate evaluation framework will guidebe collated to inform the provision of future care • Transition (GOSH and others). both data collection and data analysis.for cancer survivors. Robust evaluation of clinicaltest site activity is required to ensure any changes The important factors to consider will be: Underpinning the evaluation will be the need toput in place are measured systematically, using • The need to coordinate all of the current and engage fully with clinical test sites, beingwhere possible previously developed and tested future evaluation work to prevent duplication responsive to local need and workinginstruments. of effort and involving the same patients for a collaboratively to ensure the outcome of the series of questionnaires and evaluations evaluation is as comprehensive as it can be.Our aim is to use a multi-model and multi- • The need to ensure the test sites do not have Timing and the need for early evidence for themethod approach to evaluation that will be fully significant additional work September workshop meant that priorities havereflective of the CYP testing, the feasibility of • Our approach needs to be sufficiently flexible shifted. The focus in the early part of thisrolling-out improvements and the actual to facilitate the working both with and across evaluation has been on examining transitiondifference made to patients in the service being test sites; and integrate into the overall CYP across test sites, the care plan evaluation and aprovided to inform a prototype for care. body of evaluation evidence the local perspective on patient experience. evaluation work currently underwayWhat we mean when we refer to evaluation is: • The need to target specific areas to evaluate Further evaluation will involve, for example:• Any evaluation undertaken by the test sites services and patient experience that are locally to compare service provision and/or clinically perceived to be in need of 1.Care plans and treatment summaries: evaluate patient experience (both clinical and improvement, for example the 18+ group Questionnaires will continue to be distributed non-clinical testing) • The need to take account of testing across the and analysed post this analysis period, work to• Any overarching national evaluation to patient pathway and across a range of age be completed at the end of 2010. More detail compare service provision and/or evaluate groups. questions will be asked of these combined patient experience (both clinical and non- responses with a summary document provided. clinical testing) to ‘fill any gaps’ and the need Interviews are planned of health care to be consistent
    • 52 Building the evidence: Developing the winning principles for children and young people professionals in each of the PTCs to explore Acknowledgements The review also aims to influence clinical practice further the challenges and solutions to This summary has been provided by the CYP and identify key areas and approaches for future completing summaries: this work will be Evaluation Team, led by Professor Faith Gibson. research. undertaken by the evaluation team. Acknowledgement and appreciation to all of the Methods 2. Transition: Questionnaires will continue to be additional test sites who participated in the A comprehensive online database search was given out at GOSH until the end of the year. evaluation of the treatment summary and care carried out; data was to be of survivors of This work will be collated and added to stories plan. cancers diagnosed by 18 years of age, receiving about transition from test site work: work will be follow-up or aftercare commencing after primary undertaken by the evaluation team. treatment had ceased. Also, experts in the field 3 Evidence Review of paediatric cancer follow-up were consulted. 3. Patient experience: Our aim is to examine fully all data across test sites that include stories Models of Care for Follow-Up of Childhood Results about patient experience. We will bring this Cancer Survivors: A Systematic Review The literature search yielded 4,010 studies - 266 together as a composite story, and where gaps A summary of the review from the University of of these were considered relevant to the search are revealed in terms of the planned pathway of York. question, and these papers were read and care further face-to-face data collection will be evaluated. No reviews were found that compare undertaken by the evaluation team. This data Childhood cancer is very rare; however cancer the effectiveness of different models of follow- collection will also aim to capture further input accounts for 20% of deaths in children under up specifically in survivors of childhood cancer. from young people actively involved in shaping the age of 14. test site work as part of steering groups in It was found that a variety of models of care addition to work completed by CLIC Sargent This review seeks to identify the evidence on the have been explored and evaluated: with those 7-13 years. effectiveness of: • Problem-oriented and informal follow-up • Alternative approaches for follow-up (e.g. (these studies broadly suggest that patients During our workshop in September, it will be telephone, email, text rather than face-to-face who are not routinely followed up may, in fact, important for us to be mindful of data that is clinics) benefit from such programmes, and even emerging that could be usefully compared across • Healthcare professionals’ delivery of follow-up where patients feel they are not showing late- test sites: any ideas from those leading and care (e.g. doctor or nurse-led follow-up) effects signs, there may be relevant involved in test site work would be welcomed. • The setting of follow-up care (e.g. in clinic or complications which will benefit from outreach follow-up). medical attention This work will be undertaken by the CYP Evaluation Team, led by Professor Faith Gibson.
    • Building the evidence: Developing the winning principles for children and young people 53• Shared-care model (the results of this study Conclusions Implications for research suggest that a combination of hospital clinic In spite of the prevailing view that survivors of Ideally, suitable powered, well-conducted, care and family doctor is acceptable to most childhood cancers should be followed up for life, controlled trials of adequate duration that patients and family doctors) it is unclear whether this is necessary or directly compare the interventions and• Multidisciplinary clinic (designed to fulfil the beneficial. The literature to date does not comparators specified within this review would medical needs of patients who have multiple appear to provide answers for the follow-up of be required to provide robust evidence on the late-effects, where an annual visit was people diagnosed with cancer during childhood. optimal follow-up or aftercare for these patients. inadequate, this clinic model involves same-day These trials should be conducted in appropriate access to psychological support, tests, Despite a rigorous search for studies of relevant settings and should focus upon deriving information and medical information. Families designs, no controlled studies that evaluated meaningful outcomes. Most studies within this were unanimously satisfied) methods of providing follow-up care for review appear to only report satisfaction with• Late effects hospital based clinics (these varied survivors of childhood cancer were found. From service, whereas relevant outcomes should also in their aims and the services provided. All the small number of studies that would focus upon patient experience, detection of appeared to involve specialist nurses, doctors otherwise have met the inclusion criteria, it was morbidities, and mortality rates. The economic and consultants, and seemed to be to be a difficult to draw any overall conclusions as to implications of these interventions should also be reduced version of the multidisciplinary clinic benefits or perceived patient needs; however, it assessed given the resource implications of models). appeared that clinical care was valued highly by providing care and services over a protracted the majority of follow-up attendees; supportive timeframe.These studies reported that clinical care was care was perceived as more important byvalued highly by the majority of follow-up clinic patients who required more interventions and This review has highlighted that there may beattendees, whilst supportive care was perceived were experiencing more late-effects symptoms. opportunities to undertake research in theas more important by patients who required There were contrasting findings between a following areas:more interventions, and were experiencing more report showing ‘missed’ diagnoses when non-late-effects symptoms. There was a contrast attenders were recalled and assessed, and Primary research:between a report showing patients who were further reports demonstrating efficacy of • There is a clear need for follow-upnot followed up may have been receiving stratified low intensity follow-up. programmes to be evaluated usinginadequate care both in terms of their perceived comparative study designssatisfaction and detection of late-effects which These studies were not formally quality-assessed, • Risk stratification may be particularly relevant,require treatment, and further reports therefore caution is advised when considering published guidelines advocate a stratifieddemonstrating efficacy of stratified follow-up, these findings. follow-up programme, although there haswhere for a sub-group of patients, long-term been no evaluation of these recommendationsfollow-up is not an essential part of care. to date.
    • 54 Building the evidence: Developing the winning principles for children and young people Secondary research: Kate Light involved in running nurse-led clinics for assessing Based on the screening and sifting stages, it Information Specialist patients, provide care according to agreed appears that there may be sufficient research to protocols, provide psychological support and warrant systematic reviews on the effectiveness Russell Slack contribute to the development of patient of interventions aimed at preventing or reducing Research Fellow, Systematic Reviews services. This emerging role provides insight into harmful behaviours in survivors of childhood managers and clinicians perspectives of nurses cancers. Such areas could include: providing care in this clinical field. • Health promotion 4 Identifying core competencies • Smoking prevention/cessation required by nurses Extract from the Sheffield CYP Test Team • Alcohol/substance misuse report, August 2010 • Diet Phase one of our nurse competency project has • Sexual health. ambitiously engaged the views of clinicians and Overall context of this work managers who provide and commission care for It is important that this work links with the core An appropriate priority-setting exercise should be children and young people after cancer across competencies required by adult late-effects conducted to assess which, if any, aspect of the country. To our knowledge, this is the first nurses, and is aligned to national nursing policy. these health promotion strategies could be time such a consultation has been so extensively subject to systematic review. Such a review inclusive. Our preliminary work suggests that the should explicitly draw on evidence from other range of responsibilities presented in this survey 5 Lost to follow-up chronic diseases to maximise the value of the would be appropriate for nurses providing late information collected. effects care to children and young people. Introduction Additional roles, such as delivering alternative The increased survival of patients treated for Acknowledgements models of care, have also been proposed. This cancer during childhood led to the establishment Bob Phillips exercise provides us with a foundation for a of clinical services which provide long-term MRC Clinical Training Fellow, Systematic Reviews competency framework from the perspective of follow-up for patients. The purpose of these rp532@york.ac.uk clinicians and managers. services is to monitor patients for recognised late effects with appropriate screening determined by Morag Heirs The emerging ideal role of the nurse involved in national guidance1, to provide patients with the Research Fellow, Systematic Reviews late effects care would work alongside clinicians, tailored information about the treatment and its would contribute to the development of the possible consequences and to optimise the long- Sara Suekarran local service at a local level, and importantly, term outcome, maximising quality of life. It is Research Fellow, Systematic Reviews work as part of a multi-disciplinary team. estimated that there are 26,000 survivors of Amongst many duties, the nurse would be childhood cancer in the UK2, but it is recognised
    • Building the evidence: Developing the winning principles for children and young people 55that not all of them remain on long-term follow- Results Endocrinopathy within the BCCSS – theup. The purpose of this work is to determine the Information about follow-up status was provided impact of follow-upfrequency of hospital based follow-up amongst a by 12,978 GPs which indicated that 4,707 Thyroid disease is common amongst survivors ofpopulation of long-term survivors, to assess (36.3%) remain on hospital follow-up (see table childhood malignancy and is reported by 12.4%whether individuals not on follow-up are at a 1 on the next page). The level of follow-up was of subjects in the BCCSS. Hypothyroidism is thedisadvantage compared to those who are and to not affected by the primary diagnosis. With the most common abnormality affecting 7.7% ofunderstand why patients are not on follow-up. exception of individuals treated for leukaemia the BCCSS population while thyrotoxicosis, (47.1% on follow-up) and retinoblastoma thyroid nodules and goitre were reported byMethods (18.2% on follow-up) approximately 35% were 1.2%, 1.6% and 1.4% respectively.The British Childhood Cancer Survivor Study on follow-up. The regional distribution of The observed level of hypothyroidism is greater(BCCSS) is a population based study of 17,981 follow-up is shown in table 1 (page 57). Again than that seen in the general population. Inindividuals treated for cancer between 1941 and with the notable exception of the North West subjects treated for Hodgkin’s disease or CNS1991, who were at least five years out from (46.1%), the figure on follow-up were low, tumours the prevalence of hypothyroidism istreatment. Subjects were sent questionnaires ranging between 31.3 to 40.7%. 19.9% and 15.3% respectively. Subjectsthrough their General Practitioners asking about reported to be on follow-up were more likely totheir health and any problems they had The time out from diagnosis strongly influenced be diagnosed with hypothyroidism than thoseexperienced since treatment. The patient whether a subject remained on hospital follow- not on follow-up (12.2% vs 5.0%). Figure 1questionnaires are available at up; the proportion of patients being followed shows the impact of follow-up on the diagnosiswww.haps.bham.ac.uk/publichealth/cccss/bccss_ declined as the period of follow-up increased, of hypothyroidism in subjects treated fordocuments.shtml. In addition to the patient from 63.1% at 5-14 years from diagnosis to Hodgkin’s disease and CNS tumours groupedquestionnaire, the GPs were asked whether the 10.6% at 35+ years. Table 2 (on page 58) shows according to whether they received radiotherapysubject remained under follow-up for the the frequency of hospital follow-up in patients or not. There is a marked discrepancy betweenprimary disease or its consequences3. treated for CNS tumours and Hodgkin’s disease those on and off follow-up (CNS tumours 36.3% stratified by whether or not they received vs 10.2%, Hodgkin’s disease 33.3% vs 19.5%)Data from the BCCSS was used to identify those radiotherapy; there was a considerable decrease particularly in those who received radiotherapysubjects on and off follow-up. Sub groups the further out from treatment the patient was. during their treatment, a recognised risk factorstudied included location defined by local for hypothyroidism in both patient groups. It isgovernment office, and primary cancer also worth noting that discrepancy persists indiagnosis. Data on the frequency of long-term patients who did not receive radiotherapy andcomplications affecting the cardiovascular and appears to be more pronounced.endocrine systems was also obtained.
    • 56 Building the evidence: Developing the winning principles for children and young people Table 1: The proportion of subjects in the BCCSS who are reported to be on hospital based follow-up for their primary disease by their General Practitioner. Growth hormone deficiency was less likely to be On follow-up Not on follow-up Total diagnosed in subjects not on follow-up (18.2% n (%) n (%) n vs 6.6%) and subjects were less likely to receive growth hormone replacement if they were not All subjects 4,707 (36.3) 8,271 (63.7) 12,978 being followed (17.1% vs 5.6%). Men on Diagnosis follow-up were more likely to receive Leukaemia 1,664 (47.1) 1,867 (52.9) 3531 testosterone (13.7% vs 3.5%). Hodgkin’s Disease 330 (35.3) 606 (64.7) 936 Non-Hodgkin’s lymphoma 265 (38.4) 425 (61.6) 690 Discussion CNS tumours 920 (34.5) 1,747 (65.5) 2,667 The aim of long-term follow-up of subjects Neuroblastoma 179 (32.6) 370 (67.4) 549 treated for cancer during childhood is to Retinoblastoma 167 (18.2) 749 (81.8) 916 optimise their long-term health by monitoring Wilm’s tumour 429 (36.4) 748 (63.6) 1,177 for known late effects, managing any Bone sarcoma 170 (36.0) 302 (64.0) 472 ongoing medical condition and to provide Soft tissue sarcoma 272 (30.3) 625 (69.7) 897 appropriate advice on healthy living. The data Other 311 (27.2) 832 (72.8) 1,143 presented suggest that subjects not on long- Government Office Region term follow-up may be disadvantaged and be at London 424 (34.0) 823 (66.0) 1,247 risk of a number of chronic health conditions North East 210 (34.6) 397 (65.4) 607 which could contribute to poor health and a North West 711 (46.1) 832 (53.9) 1,543 reduced quality of life. Yorkshire and Humber 459 (40.3) 679 (59.7) 1,138 East Midlands 330 (34.1) 639 (65.9) 969 Patients treated with cranial radiotherapy are at West Midlands 496 (40.7) 722 (59.3) 1,218 risk of hypopituitarism, the symptoms of which East England 408 (31.3) 896 (68.7) 1,304 are often non-specific and include fatigue. It is South East 571 (31.6) 1,238 (68.4) 1,809 difficult to diagnose and requires specialist tests South West 397 (31.3) 872 (68.7) 1,269 performed in experienced units. Hypopituitarism Wales 230 (34.7) 433 (65.3) 663 has an adverse effect upon a number of Scotland 444 (39.4) 684 (60.6) 1,128 cardiovascular risk factors which is thought to N. Ireland/Channel Islands 2 (16.7) 10 (83.3) 12 contribute to the two fold increase in mortality Unable to code 25 (35.2) 46 (64.8) 71 observed in affected patients. Hypopituitarism is
    • Building the evidence: Developing the winning principles for children and young people 57 Table 2: The frequency of hospital based follow-up stratified by time from treatment.managed with hormone replacement includinggrowth hormone, sex steroids, hydrocortisone Period of hospital follow-up from diagnosis (years)and levo-thyroxine. n (%)The data presented have shown patients are 5-14 15-24 25-34 35+ Totalmore likely to receive growth hormone, sexsteroids (in the case of men) or thyroxine if they All subjects 1,694 (61.3) 2,223 (40.7) 607 (20.0) 183 (10.6) 4,707 (36.3)are on hospital follow-up. The discrepancy in sex CNS tumoursteroid replacement observed between men andwomen is not unexpected; women with primary XRT yes 31 (68.9) 222 (44.4) 124 (28.1) 54 (20.3) 431 (34.4)or secondary gonadal failure present with beamenorrhoea, but men with testosterone XRT no 18 (40.9) 92 (27) 34 (15.5) 16 (8.5) 160 (20.2)deficiency present with non-specific symptoms4. Hodgkin’s diseaseThe large difference in the diagnosis ofhypothyroidism between patients on and off XRT Yes 2 (33.3) 88 (36.1) 43 (21.0) 8 (9.6) 141 (26.2)follow-up is of concern. Hypothyroidism isrelatively easy to diagnose and the majority of XRT no 2 (50.0) 33 (41.3) 5 (12.8) 1 (14.3) 41 (31.5)cases in the general population are diagnosedand managed in primary care. The majority ofhypothyroidism in the general population iscaused by primary thyroid disease and isassociated with raised thyroid stimulating The overall frequency of hospital based follow- established late effects clinics. The decline inhormone (TSH) and a low thyroxine level. A up, on average 36.3% across the UK, is poor hospital based follow-up is mirrored in patientsconsiderable number of chemical pathology within the BCCSS cohort. Although follow-up treated for CNS tumours and Hodgkin’s diseasedepartments offer only TSH as a screening test appears reasonable 5-14 years after treatment including those treated with radiotherapy and isfor thyroid function. In secondary when it is 61% it declines to 10% at 35 years or a cause for concern. The effect of radiotherapyhypothyroidism, which is most likely in patients more after treatment. This may reflect the on the pituitary and thyroid glands evolves overtreated for CNS tumours, the TSH is normal so change in practice which has occurred over the many years thus there may be a significantthe diagnosis will be missed if a thyroxine level is last 30 years when paediatric oncology centres number of patients at risk of endocrinenot provided5. have continued to follow their patients and dysfunction, including malignant disease of the
    • 58 Building the evidence: Developing the winning principles for children and young people Table 3: The frequency of endocrinopathy reported within the BCCSS in patients on and off hospital based follow-up.. thyroid, who are not receiving the care they need to optimise their health many years after being Endocrinopathy On follow-up % Not on follow-up % treated for childhood cancer. Work that is Hypothyroidism 12.2 5.0 ongoing in Birmingham, where a late effects clinic has been established for many years, will Thyrotoxicosis 1.2 1.3 investigate the factors that contribute to subjects being lost to follow-up. Thyroid nodules 2.0 1.3 It is necessary to sound a note of caution. It is Diabetes mellitus not known whether the differences in pathology Diet controlled 0.6 0.8 reported by subjects on and off hospital based follow-up reflect a self- selection bias. Are Oral hypoglycaemic agents 0.7 0.7 patients on follow-up because they have the 0.9 Insulin 0.9 diagnosis? Of course it is not known whether patients not being followed in a hospital based Growth Hormone Deficiency 18.1 6.6 clinic have been screened for the conditions and Receiving GH therapy 17.1 5.6 found to be healthy. More work is needed to determine whether all adults treated for Osteoporosis 4.1 2.8 childhood malignancy who are no longer on hospital based follow-up need to be recalled and Women receiving sex steroids 13.5 13.2 assessed for late effects. The present work 3.5 Men receiving sex steroids 13.7 suggests that there are high-risk groups who may be suffering unrecognised adverse consequences of their previous treatment, some References of which may impact upon the duration as well 1Skinner R, Wallace WH, Levitt G. Therapy based long-term follow-up. In: Group CCaL, ed. 1995. as the quality of their lives. 2UK Childhood Cancer Research Group. Cancer Stats Monograph: National Registry of Childhood Tumours; 2004. 3Hawkins MM, Lancashire ER, Winter DL, Frobisher C, Reulen RC, Taylor AJ, et al. The British Childhood Cancer Survivor Study: Objectives, methods, population structure, response rates and initial descriptive information. Pediatric blood & cancer. 2008 May;50(5):1018-25. 4Toogood AA, Stewart PM. Hypopituitarism: clinical features, diagnosis, and management. Endocrinology and metabolism clinics of North America. 2008 Mar;37(1):235-61, x. 5Spoudeas HA. Disturbance of the hypothalamic-pituitary thyroid axis. In: Wallace WH, green DM, eds. Late Effects of Childhood Cancer. London: Arnold 2004:212-24.
    • Building the evidence: Developing the winning principles for children and young people 59Birmingham Children’s Hospital Team(led by Helen Jenkinson) The impact of follow-up on the diagnosis of hypothyroidism in subjects treated for Hodgkin’sThe Birmingham Childrens Hospital will disease and CNS tumours grouped according to whether they received radiotherapy or notinvestigate the cohort of patients that have been 40 Frequency of hypothyroidism (%)lost to follow-up, with the aim to identify anykey indicators or patterns within this group of 35patients. 30 25Further detail will be presented by theBirmingham team in September by a poster 20submission. 15 10Acknowledgements 5Andy ToogoodConsultant Endocrinologist, National Advisor to 0 CND Disease Hodgkin’s DiseaseChildhood and Young Adult workstreamUniversity Hospitals Birmingham NHS Foundation Follow up: YES Follow up: NO Follow up: YES Follow up: NO XRT: YES XRT: YES XRT: NO XRT: NOTrust, Queen Elizabeth Hospital, Birminghamandrew.toogood@uhb.nhs.ukMike HawkinsChair in Epidemiology and Director of Centre Birmingham Children’s Hospital Team (led by Children’s Tumour Registry Late Effects databasefor Childhood Cancer Survivor Studies, Helen Jenkinson) is ongoing. 1,814 patients have been identifiedUniversity of Birmingham The Birmingham Childrens Hospital will from the database who were diagnosedm.m.hawkins@bham.ac.uk investigate the cohort of patients that have been between 1964 and 2005, are at least five years lost to follow up, with the aim to identify any from diagnosis and have been off treatment forAdditional lost to follow-up work key indicators or patterns within this group of a minimum of three years. Of these, 1,387 areWe also acknowledge the work of the patients. still attending clinics at BCH or SOH and 427Birmingham team led by Helen Jenkinson, and have become ‘lost to follow up’ for a variety ofthe Brighton team led by Anne Davidson and The local analysis of the ‘lost to follow up’ reasons. Disease and demographic variablestheir respective service improvement local teams. cohort, using data from the West Midlands from both of these groups are being analysed in
    • 60 Building the evidence: Developing the winning principles for children and young people order to identify factors which may be of 6 Pan Thames shared care long-term In this area, there are 370 new cancer diagnoses relevance in patients becoming lost to follow. follow-up each year in the 0-14 age group, and 400 new The data has been collated and is currently with diagnoses in the 14-24 year-old group; therefore, the statistician. Gill Levitt surveyed shared care hospitals in the there is an expectation of 540 new long-term Pan Thames area, and areas feeding into the follow-up patients entering the system each year Further detail will be presented by the principal treatment centres in London, to within the region. Over 1,800 LTFU patients are Birmingham Team in September by a poster ascertain whether they were interested in actively seen in the Thames PTC, with more than submission. providing long-term follow-up care for patients double that number who are not actively seen, up to the age 16-18 years. Over 75% of but may require surveillance and later access to a Brighton patients can be expected to be long-term late effects service (majority are adults). It is also envisaged that provision of services can survivors, and Gill set out to see if - by be not only flexible but also provide a robust rationalising services within the Pan Thames area Most under-18s are seen in their PTC, a few are service for patients. In an attempt to map our - they could provide a good quality, cost-effective seen in their POSCU. current services it has been evident that our long-term follow-up service that is patient- service is complex and follow-up and long-term centred, locally-based, and taking account of the The NCSI have suggested patient pathways follow-up arrangements have been arranged in a individual’s risk of developing late consequences which are currently being evaluated; the Pan rather ad hoc way, partly dependent on patients’ of treatment. Thames shared care project would help to inform original principal treatment centre. An audit of the pathway. 30 sets of notes of patients believed to be lost to The area served by the three London Principal follow-up was undertaken. 12 (40%) had been Treatment Centres (PTCs) is vast, stretching from It clearly makes economic sense for patients to discharged as there was no suitable service for the Essex coast over to High Wycombe in receive care locally, taking into account travel them to attend, nine (30%) were lost between Oxfordshire, and from Hertfordshire down to the time and expense. The patients who would the shared care arrangements, e.g. it states in south-east coast. The PTCs are Great Ormond benefit from shared follow-up would be level 1 one set of notes written in Brighton that the Street Hospital, University College London to 2, patients at low risk of developing late patient’s next appointment would take place in Hospital, and the Royal Marsden Hospital. sequelae in the follow-up period covered by the Southampton and in one year they would return There are 22 Paediatric Oncology Shared Care paediatric service. to Brighton. There is no correspondence evident Units (POSCUs) in the North Thames area, and to show that either appointment took place. The 20 POSCUs in the South Thames region. remaining nine (30%) became lost to follow-up because their consultant – either in shared care or at a PTC - left the establishment.
    • Building the evidence: Developing the winning principles for children and young people 61Requirements for long-term follow-up: To support the POSCUs there would need to be 7 The non-clinical policy• Age-appropriate clinics that are separate from some local investment, and the PTCs could use project work the acute oncology clinics their freed-up time to provide teaching, email• Expertise in diagnosis and in late effects and telephone support to the POSCUs. If Policy review summary treatment, both physical and psychological problems arose, there would be a need for a This policy review has been carried out by CLIC• Provision of age-appropriate information to prescribed pathway for patients to immediately Sargent and commissioned by the National empower patients and their families re-enter the PTC late-effects service. Cancer Survivorship Initiative, a programme• General paediatric care, and surveillance of established by the Cancer Reform Strategy. The growth and development This is an extract from Dr Gill Levitt’s report review aims to assess the policy that is currently• Tests to be carried out if necessary (as dated April 2010. A copy of the full report can in place to young survivors of cancer to ensure indicated by the PTC). be found on NCSI and NHS Improvement their outcomes are as good as their peers, and to websites at: see how that matches with what young peopleFrom the results of the survey (that was www.improvement.nhs.uk tell us they need. It focuses primarily on policy incompleted by 25 hospitals), it is clear that there www.ncsi.org.uk England.is overwhelming support for the idea ofproviding local long-term follow-up care for child Acknowledgement Methodologycancer patients. These hospitals in the Pan Gill Levitt The review was conducted by means of anThames area see between 2 and 19 new cancer Consultant in Oncology and Late Effects extensive desktop literature search to identifypatients each year. Great Ormond Street Hospital for pertinent current research and policy, advice and Children NHS Trust guidance, both cancer-specific and that relatingAll centres would provide level 1 surveillance, National Clinical Lead, and Chair of Clinical to children, young people and adults. Theand many would provide investigations to level 2 Reference Group relevant evidence was then examined in depth topatients. The financial benefits would be levitg@gosh.nhs.uk highlight areas where it specifically related toapparent to both the patients and young cancer survivors. In addition, findingscommissioners, and would free up time and from published consultations with youngexpertise to deliver complex care to the level 3 survivors of cancer and their families werepatients who are at risk of multiple and severe considered to identify what they said theylate effects. needed from a policy framework, and how they thought their needs were currently being met.
    • 62 Building the evidence: Developing the winning principles for children and young people Interviews were then held with professionals in The policy review is organised into three distinct Careers education, advice and guidance are the field to test this information against their areas. These are: critical for young cancer survivors if they are to first-hand experience. • Education, employment and training fully reach their potential beyond the age of 18. • Emotional and psychological wellbeing Again, there is a shortage of data about the The findings and recommendations were then • Health and recreation. numbers of young cancer survivors accessing formed by bringing this information together. advice and guidance services such as In the section on education, employment and Connexions. Results training, the available research finds that The review considers the National Institute for survivors of cancer on the whole do not perform This has major implications for the section of the Clinical Excellence’s Improving Outcomes in worse in their academic studies than the review looking at emotional and psychological Children and Young People with Cancer: The population at large, with the exception of wellbeing. Personal, social and health education Manual, the ‘Every Child Matters’ programme survivors of a small number of particular cancers. (PSHE) is now recognised as an important part of and the ‘National Service Framework’ as However, young cancer survivors themselves say mainstream education, helping adolescents cope overarching policies which affect young that cancer has a detrimental effect on their with a key period in their development. Young survivors. It notes that these are inclusive policies educational attainment and their employment cancer survivors often miss out on key elements that promote good outcomes for 0 to 19 year- prospects. They say they want to see better co- of school-based PSHE as a result of their olds, but recognises that there is a difference ordination between health and education treatment, and the fact that hospital schools are between the good practice that the policy cites services generally. not obliged to offer PSHE is a cause for serious and the actual practice that is implemented. concern. CLIC Sargent’s report, More Than My Illness, The review highlights that one effective tool for provides strong evidence of a need to take a supporting young cancer survivors is the Young cancer survivors overwhelmingly affirm more systemic approach and to look at all the Common Assessment Framework (CAF), a the importance of receiving emotional support needs of young people within the context of the standardised approach to conducting following cancer diagnosis and treatment and it families and communities that they live in. It assessments of children’s additional needs and appears to increase with age. 96% of young suggests a range of methods, including most deciding how these should be met. Used cancer survivors aged 20 to 24 classed notably a key-worker led model of provision, to appropriately, it should also enable better sharing psychological support as important in CLIC ensure these policies are implemented on the of information between service providers, which Sargent’s latest study, More Than My Illness: ground. is critical to improving outcomes. It is not clear Delivering Quality Care for Young People (2010). that this is happening in practice.
    • Building the evidence: Developing the winning principles for children and young people 63The policy framework in this area is governed by The final area the review examines is health and scoping exercise should be undertaken, looking atthe Mental Health Acts of 1983 and 2007. Again recreation. Research suggests that young cancer more effective models that will ensure services arethere is a major gap in the legislation as far as survivors have fewer health worries than their peers accessible to the 19 to 24 age group.young cancer survivors are concerned. Young in general, and that 90% believe that overall theypeople aged 18 to 24 with mental health needs are in good health. Studies also suggest that they This review recognises that the best way to improvewill be referred to adult mental health services, are less likely to abuse illicit drugs, smoke or outcomes for young cancer survivors is not tobut these services only address the needs of engage in problem drinking. single them out, particularly if they are trying toadults with diagnosed mental illnesses, and most reintegrate back into mainstream life, although it is The key piece of policy here is the 2004 White acknowledged that they could benefit fromyoung survivors of cancer will not meet this kind Paper, Choosing Health, Making Healthy Choices targeted support in some areas.of diagnosis. Easier. Again, no mention is made of those who have experienced long-term illness, and the various The main finding of this review is that the key toYounger cancer survivors, up to the age of 18, are targets set out in the White Paper are also silent on enabling young cancer survivors to better accesscovered by policy and guidance for Child and the subject. mainstream and generalist provision is informationAdolescent Mental Health Services (CAMHS). A and empowerment. Therefore the second of thegreat deal of work has gone into this area; Recommendations review’s recommendations is for the NCSI to leadImprovement, Expansion and Reform (Department The review finds that there are significant gaps in on the development of a guide for young cancerof Health, 2002) called for a ‘comprehensive the current policy framework for young cancer survivors and community-based professionals onCAMHS’, which focused on early intervention to survivors aged 19 to 25, and evidence the information and themes covered in the review.promote resilience and emotional wellbeing among demonstrates that the needs of this cohort are The guide should set out what local services oughtchildren, rather than focusing on mental illness and different from those of older adults but equally to be doing to support young cancer survivorstreatment. from children. However, there appears to be no under the existing policy framework and would specific policy relating to community provision that provide them with targeted information on whatThe National Service Framework for Children, addresses the need of this age group, and it should provisions Government policy has made to ensureYoung People and Maternity Services is another be noted that this gap relates to all young adults they get back on course. As well as providingimportant part of the policy jigsaw governing with chronic health needs. Policy and delivery gaps young cancer survivors with useful information onemotional and psychological wellbeing and extend across most areas of need and particularly the services available to them and their rights andsimilarly, CAMHS has been mapped nationally since mental health, sexual health, and routes to entitlements in relation to these services, the guide2002 to gauge its effectiveness. education, employment and training. The first would raise awareness of the needs of young recommendation of this review is therefore that a cancer survivors and aid generalist and community-
    • 64 Building the evidence: Developing the winning principles for children and young people based practitioners, including teachers and other This guide could ultimately be assimilated into the educationalists, to better tailor their services to this Department of Health’s ‘Information Prescriptions’ group of young people as appropriate. It would programme being developed for children and also aid the provision of care closer to home as well young people with cancer. As the policy context for as a move towards the type of model set out in public services is being transformed at present it CLIC Sargent’s report More Than My Illness. would be sensible to wait to develop a guide until the policy landscape for public services is really clear The guide should cover the full range of areas thus avoiding producing something that might covered within this review, including: date. • Employment programmes • Young people’s advice services such as This review argues that it is critical that young Connexions people themselves have more of a say in future • Benefits work around survivorship, how community services • Requirements on schools respond to young people who have had time out, • Individual education plans and also on wider cancer services development. • Common Assessment Framework (CAF) The third and final recommendation is therefore • Child and Adolescent Mental Health that Department of Health ensure that young Services (CAMHS) people’s views are systematically feeding into work • Youth services and facilities using the many existing consultation avenues • Personal, social and health education available within charities and the NHS. • Details of relevant specialist voluntary sector information, training and services. Acknowledgement This summary has been provided by CLIC Sargent.
    • Building the evidence: Developing the winning principles for children and young people 65What are the challenges and barriers to implementation?This publication has provided some excellent A synopsis of the main challenges andexamples of potential models of care which are barriers to implementation are:very positive outcomes from the testing phase of • The complexity of successful IT interface withthe Children and Young People Survivorship existing NHS IT systems (Leeds and CambridgeInitiative. experienced issues during their testing work) • Educating GPs and other health professionalsHowever, it is also very important, as it is with all that it is worth doing things differently forservice improvement work, to share with the patients to reduce unnecessary follow-upreader the challenges and barriers to • Educating health professionals to start theimplementation more widely. preparation for transition and self- management much earlier rather thanIt is important to do so to encourage ongoing continue to follow-up patients ad infinitumdebate and discussion to work towards • The lead in times to obtain R&D and/or ethicsaddressing these challenges to support the approval for specific tools (for example thedelivery of improved continuous aftercare for all Psycho-Social Tool – The Marsden Team)those patients living with and beyond cancer to • The lack of compatibility with GP Read Codeslive a normal life as soon as possible. (which can be used to record clinical summary information) • The resource issue (specifically clinical nurse specialists) to deliver the CYP IOG measures in relation to paediatric care • Inherent clinical practice in different centres.
    • 66 Building the evidence: Developing the winning principles for children and young people Recommendations to commissioners in alignment with the QIPP(P) agenda QIPP(P) Recommendations Benefits Quality • Implementation of care plan/treatment summary Proactive communication for patients and professionals to for all patients effectively manage risk, and ensure personalised care • Commissioning of packages of care that are Effective delivery of care to meet patient choice, and the planned, informed and personalised in terms of provision of safe and only-when-needed aftercare the continuation of aftercare • Provision of appropriate, personalised non-clinical Enables patient to return to a normal lifestyle with an support across healthcare boundaries emphasis on the whole person Innovation • A shift to informed, safe, self-management Ownership and control back to patients, and more effective use of resources • Provision of automated surveillance Reduction of unnecessary outpatient appointments from an individual patient and clinical perspective Productivity • Provision of alternative, non-traditional hospital Saves costs for NHS and patients, and enables resource to ‘follow-up’ to reduce unnecessary outpatient be used elsewhere appointments (e.g. telephone, nurse-led) Prevention • Provision of clinical and non-clinical care and • Prevents readmission and escalation of conditions support and screening (e.g. psychosocial screening) • Timely referral to necessary services Personalised Patient Care • Providing choice to patients (and carers) to meet • Empowers patients and Involvement individual need
    • Building the evidence: Developing the winning principles for children and young people 67The next steps: beyond September 2010The 23 September 2010 National CYP Workshop in the future (the work is being led by April 2011 – March 2012marks a significant milestone in terms of Professor Jane Maher of Macmillan and The prototyping phase would continue for apresenting the latest evidence from our CYP test National Clinical Lead for the Adult period of nine months followed by a threesites to highlight and inform commissioners of Survivorship workstream and Dr Gill Levitt, month period of consolidating the evidence andthe types of services that have been shown National Clinical Lead for the CYP producing the CYP ‘Winning Principles’.(following an initial phase of testing) to provide workstream)personalised, continuing aftercare to all cancer • There will also be work between the Adult and April 2012 onwardssurvivors that are responsive to patient needs. CYP work streams to integrate the pathway Implementation of the CYP ‘Winning Principles’. particularly in relation to – Assessment andWe very much want to continue to work with Care Planning, Patient Information, aftercareour CYP test sites beyond September 2010 to / Follow-up and Treatment Summaries andfirstly, capture any additional evidence from communication across healthcare boundaries.ongoing work and secondly, to more specificallytest models of care across a continuum of September 2010 – December 2010aftercare pathway. Identify and develop specific prototype models for testing across agreed CYP pathways toTo develop and move forward this initiative provide continuous aftercare for survivors ofbeyond the stage we have reached by cancer.September 2010, the next stage will comprisethe following: December 2010 – March 2011 Develop a programme of prototype testingSeptember 2010 onwards with agreed centres incorporating key• Continuation of the evaluation exercise, led by elements of personalised aftercare Professor Faith Gibson survivorship model/models of care with• Joint work with Macmillan and the CYP work key service components. stream to improve the effectiveness of the transition of young people into adult services. Wednesday 16 March 2011 The outcomes and learning from this work will A National CYP Workshop to launch the be invaluable to inform the commissioning of prototyping work. services and provision of continuous aftercare
    • 68 Building the evidence: Developing the winning principles for children and young people Proposed approach Example 3* The principles during the prototyping phase will Dealing with late effects and co-morbidities be that they incorporate the following features: across all agreed pathway levels • An emphasis on young adults (although not Example 4* exclusively) Following through the concepts of: • Across a pathway(s) - which will require final agreement following consultation on the draft 1. The right information at the right time across pathways the pathway. • Across traditional health care boundaries 2. The right care co-ordinator at the right time • An holistic approach to ensure both the clinical the pathway. and non-clinical needs of patients are included – with specific additional work in relation to * Further detail will be developed from September the non-clinical support needed to December 2010 and published on the NHS • Driven by an underlying need to provide Improvement website www.improvement.nhs.uk personalised care for each individual patient – with a specific focus on self-management. Examples of prototyping model/s of care will include: Example 1* Diagnosis through to Care Plan/Treatment Summary to appropriate personalised aftercare Example 2* Transition through to adult services including appropriate social and non-clinical support
    • Building the evidence: Developing the winning principles for children and young people 69Signposting to additional information and key contact detailsThe NHS Improvement website provides a wealthof information on both QIPP and adult andchildren and young people cancer survivorshipwork streams:www.improvement.nhs.ukFull reports from the CYP test sites will beavailable on the NCSI website in the autumn:www.ncsi.org.ukGreat Ormond Street Hospital forChildren NHS Trust website:www.ich.ucl.ac.uk/clinicalservices/long-termfollow-upchildhoodcancerOther useful links:www.cclg.org.ukwww.cclg.org.uk/researchandtreatment/guidelineswww.aftercure.orgwww.survivorshipguidelines.orgwww.survivorshipguidelines.org/healthlinkwww.ncsi.org.ukwww.healthtalkonline.orgwww.teenagehealthfreak.org
    • 70 Building the evidence: Developing the winning principles for children and young people Acknowledgements The children and young people testing work Members of the DH Cancer Policy Team (in would not have been possible without the particular Claire Bache and Nneka Chukwurah, commitment, hard work and enthusiasm of the with whom we have worked closely during this many individuals and teams working within our initiative). test sites. My NHS Improvement colleagues within the I would like to take the opportunity to express Communications and Marketing Team, the NHS our thanks and appreciation for their support, Improvement System Team and the secretarial expertise and co-operation from the start of this and administrative input that helps to support initiative. this work. For example: Many thanks to my colleague Judi Tapp, National All of our patient representatives (nationally and Improvement Lead, for her attention to detail locally). and her continuing support. Members of our Children and Young People We look forward to continuing to work with you Steering Group. all during the coming months. Members of our Children and Young People Thank you again to everyone involved. Clinical Reference Group. The Clinical Leads, Service Improvement Leads and Facilitators and Project managers from all of those sites working with us on this initiative. Patricia Morris NHS Improvement Director – Cancer Members of the team from CLIC Sargent, the Leading – on behalf of NHS Improvement – Teenage Cancer Trust, and Macmillan. the Children and Young People Workstream
    • Building the evidence: Developing the winning principles for children and young people 71Contact detailsNHS Improvement Judi Tapp Adam Glaser judi.tapp@improvement.nhs.uk adam.glaser@leedsth.nhs.ukPatricia MorrisNSH Improvement Director – Cancer Louise Hooker Alexandra Brownsdonpatricia.morris@improvement.nhs.uk louise.hooker@ncat.nhs.uk alexandra.brownsdon@hotmail.comTel: 07899 787 215 Mike Hawkins Baba InusaJudi Tapp m.m.hawkins@bham.ac.uk inupdb@aol.comNHS Improvement – National Improvement Leadjudi.tapp@improvement.nhs.uk Patricia Morris Charlotte HailsTel: 07747 020 072 patricia.morris@improvement.nhs.uk charlotte.hails@btinternet.com Rod Skinner Claire BacheChildren and Young People Clinical roderick.skinner@ncl.ac.uk claire.bache@dh.gsi.gov.ukReference Group Members Susan Mehta Dara de BurcaGill Levitt mehtas@gosh.nhs.uk dara.deburca@clicsargent.org.ukNational Clinical Lead, andChair of Clinical Reference Group Fay Scullionlevitg@gosh.nhs.uk & gill@hebber.co.uk Children and Young People Steering Group fscullion@macmillan.org.uk MembersAdam Glaser Frank Chinegwundohadam.glaser@leedsth.nhs.uk Faith Gibson frank.chinegwundoh@nhs.net Chair of CYP workstreamAndy Toogood gibsof@gosh.nhs.uk & faithinstudy@aol.com James Ashtonandrew.toogood@uhb.nhs.uk ukvds@hotmail.co.uk Gill LevittElaine Sugden National CYP Clinical Lead Judi Tappelainesugden@doctors.org.uk levitg@gosh.nhs.uk & gill@hebber.co.uk judi.tapp@improvement.nhs.uk
    • 72 Building the evidence: Developing the winning principles for children and young people Kavi Sharma CYP Evaluation Team kavi.sharma@gp-a89027.nhs.uk Faith Gibson Louise Hooker Chair of CYP Steering Group louise.hooker@ncat.nhs.uk gibsof@gosh.nhs.uk & faithinstudy@aol.com Mike Hawkins Gill Levitt m.m.hawkins@bham.ac.uk National CYP Clinical Lead levitg@gosh.nhs.uk & gill@hebber.co.uk Patricia Morris patricia.morris@improvement.nhs.uk Charlotte Hails Patient Representative on the Ryan Bishop CYP Steering Group ryan.bishop@icr.ac.uk charlotte.hails@btinternet.com Simon Davies Nicola Bowden simon@teenagecancertrust.org Independent Consultant nicolaj.bowden@btinternet.com Susan George susan.george@clicsargent.org.uk Judi Tapp NHS Improvement – National Improvement Lead Terry Bowley judi.tapp@improvement.nhs.uk terry.bowley@ntlworld.com Kate Pye Tom Barber Independent Consultant tom.barber2@gmail.com kate@pye-consultancy.com
    • Building the evidence: Developing the winning principles for children and young people 73
    • 74 Building the evidence: Developing the winning principles for children and young people