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


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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

  1. 1. 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
  2. 2. 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
  3. 3. 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. 4. 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.
  5. 5. 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. 6. 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.
  7. 7. 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 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. 8. 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.
  9. 9. 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. 10. 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
  11. 11. 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. 12. 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.
  13. 13. 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, 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.
  14. 14. 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.
  15. 15. 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. 16. 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.
  17. 17. 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 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 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 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. 18. 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.
  19. 19. 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:
  20. 20. 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 ©NHS Improvement 2010 | All Rights Reserved Publication Ref: IMP/cyp2 - September 2010 Delivering tomorrow’s improvement agenda for the NHS
  21. 21. 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.
  22. 22. 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.
  23. 23. 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 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
  24. 24. 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 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 (, 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 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, 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 –
  25. 25. 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