NHSCANCER   DIAGNOSTICS   HEART   LUNG   STROKE                                                  NHS Improvement          ...
Front cover: Photographs of some of our prototypeteams, national patient representatives and Macmillan.
Models of care to achieve better outcomes for children and young people living with and beyond cancer   3Contents      For...
4       Models of care to achieve better outcomes for children and young people living with and beyond cancerForewordThe i...
Models of care to achieve better outcomes for children and young people living with and beyond cancer            5Patient ...
6      Models of care to achieve better outcomes for children and young people living with and beyond cancerAcknowledgemen...
“   All aftercare services need    to be cost effective and    delivered by the appropriate    health care professional to...
8      Models of care to achieve better outcomes for children and young people living with and beyond cancerSection oneExe...
Models of care to achieve better outcomes for children and young people living with and beyond cancer      9Since Septembe...
10     Models of care to achieve better outcomes for children and young people living with and beyond cancer7. To achieve ...
“   The CYP workstream,    working with clinicians,    commissioners, patients and    local teams have developed    nation...
12     Models of care to achieve better outcomes for children and young people living with and beyond cancerSection twoThe...
Models of care to achieve better outcomes for children and young people living with and beyond cancer        13The childre...
14   Models of care to achieve better outcomes for children and young people living with and beyond cancer          Paedia...
Models of care to achieve better outcomes for children and young people living with and beyond cancer   15 act located at ...
16Paediatric aftercare pathway scenario level 1 and 2                                                                     ...
Paediatric aftercare pathway scenario level 2                                                                             ...
18Paediatric aftercare pathway scenario level 3                                                                           ...
“   All children and young    people who are cancer    survivors should expect    to receive the same,    high quality sta...
20   Models of care to achieve better outcomes for children and young people living with and beyond cancer          Teenag...
Models of care to achieve better outcomes for children and young people living with and beyond cancer   21thwaysted survei...
22Teenage and young adult aftercare pathway scenario level 1                                                              ...
Teenage and young adult aftercare pathway scenario level 2                                                                ...
24   Models of care to achieve better outcomes for children and young people living with and beyond cancer          Teenag...
Models of care to achieve better outcomes for children and young people living with and beyond cancer   25ted surveillance...
26Teenage and young adult aftercare pathway scenario level 3                                                              ...
Models of care to achieve better outcomes for children and young people living with and beyond cancer   27Section threeChi...
28     Models of care to achieve better outcomes for children and young people living with and beyond cancerThe original W...
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
Models of care to achieve better outcomes for children and young people living with and beyond cancer
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Models of care to achieve better outcomes for children and young people living with and beyond cancer

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All children and young people who are cancer survivors should expect to receive the same , high quality standard of individualised care, irrespective of where or when they are treated, their type of cancer or stage of the disease
(Published March 2011)

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Models of care to achieve better outcomes for children and young people living with and beyond cancer

  1. 1. NHSCANCER DIAGNOSTICS HEART LUNG STROKE NHS Improvement CancerModels of care to achieve better outcomesfor children and young people living with and beyond cancer
  2. 2. Front cover: Photographs of some of our prototypeteams, national patient representatives and Macmillan.
  3. 3. Models of care to achieve better outcomes for children and young people living with and beyond cancer 3Contents Foreword 4 Acknowledgements 6 Section one 8 Executive summary Section two 12 The development of consistent patient pathways Section three 27 Levels of care and risk stratification Section four 30 Proposed models of care Section five 33 Components to support the models of care Section six 37 Defining quality through key indicators Section seven 38 Using measures to achieve improvement Section eight 40 Our evidence so far Section nine 45 Key recommendations emerging from this work to date (March 2011) References 46
  4. 4. 4 Models of care to achieve better outcomes for children and young people living with and beyond cancerForewordThe importance of the ‘right care’A patient representative, health professional and childhood cancer survivor’s perspective.Setting the scene professionals and commissioners believe are theAll children and young people (CYP) who are cancer needs. Whatever models are developed, they mustsurvivors should expect to receive the same, high make sense to young people, that it is clear withinquality standard of individualised care irrespective of the model of care what support is available for themwhere and when they are treated, their type of to continue to get on with their lives.cancer or stage of disease. Consistency in the carepathways delivered to them is therefore of paramount What it might mean to young peopleimportance in order to achieve this expected aim. I feel that all CYP cancer survivors should receive individualised care that is tailored to meet their ownClinical risk stratification is also extremely important personal needs. It is essential that all CYP cancerin providing individualised care tailored to the clinical, survivors are kept informed about their illness with apsychosocial and practical needs of each CYP cancer level of information appropriate to them that issurvivor. We recognise as the number of CYP cancer updated when necessary. This can empower CYPsurvivors increase, it will not be possible or cancer survivors to play an active role in their owneconomically viable to follow-up every cancer care by facilitating educated discussion with healthsurvivor in the way that has become accepted. While care professionals about their treatment and ongoing Alexandra Brownsdonmany CYP cancer survivors will need to attend care. Being appropriately well informed could also Patient Representative NCSIhospital appointments, others may benefit from assist with responsible self-management, and CYP Steering Groupmore remote follow-up methods including telephone promote the opportunity for choice and control in aand text messaging. The follow-up of all CYP cancer situation where there has previously been very little.survivors is still extremely important but the way inwhich this happens can now be re-evaluated in line Treatment summaries will be a useful tool for CYPwith modern technology, offering many young cancer survivors and will avoid them continuallypeople a more practical and maybe more acceptable having to repeat their medical history to new healthapproach to their ongoing care. professionals. Having this information should also increase knowledge of what has happened, with anSuch high quality care throughout CYP cancers agreed care plan helping young people tosurvivors’ lifetime is essential in achieving a successful understand the ongoing care they may need andlong-term outcome. Health professionals have a how they can take responsibility for how they lookresponsibility to consider the treatment delivered in after themselves and make health and life choices.conjunction with the long-term potential effects this Care should be taken however, that this informationwill have on the rest of the young person’s life is not used in a negative way against the survivorsincluding normal development, independent living and that confidentiality is maintained. Transition isand academic and social achievements. Providing also an extremely important part of follow-up careappropriate models of follow-up care and ensuring and should be consistent across all models. Inthat cancer survivors have access to adequate addition, transition should also be consistent withsupport and advice throughout their lives is clinical risk stratified care to ensure that this isfundamental to maximising long-term patient well continued from childhood into adulthood. It is alsobeing. important that patient transition is carried out by proactive, well-informed health professionals toIn order to be appropriately implemented and acted maintain a smooth transition of care. Long-termupon, the models of care delivered to CYP cancer follow-up care of CYP cancer survivors would also besurvivors must be clearly set out to commissioners. greatly aided by having access to a care coordinatorThey must also be realistic in terms of cost to ensure function to provide a reliable support resource for allsustainability and to meet the needs of all patients in CYP cancer survivors throughout their lives andthe light of the current NHS financial pressures. It is cancer journey.important too that the models of care are able tomeet the individual needs of the CYP cancer survivorsthemselves and not just what the healthcare
  5. 5. Models of care to achieve better outcomes for children and young people living with and beyond cancer 5Patient representation has formed an integral and Response from the Co Chairs of thevaluable part of the National Cancer Survivorship NCSI CYP Steering GroupInitiative (NCSI) CYP Steering Group’s work and CYP “Thank you to Alex for setting the scene and placingcancer survivors have contributed to shaping the this latest publication in context of both what isdirection of this work by providing constructive and important for young cancer survivors as well aspractical input based on their own, first hand where test site activity has moved to. We are muchexperiences. It has been extremely important for CYP appreciative of the work of young people like Alex,cancer survivors, as service users, to express their members of the NCSI CYP Steering Group, and thevoice in how the new models of care are developed young people and other family members whoas this has enabled survivor’s views to inform the care continue to contribute to the test site steeringthat will directly affect this cohort in the future. groups. It is their input, and the input of committed professionals that has facilitated the progress you see documented here.Alexandra BrownsdonPatient Representative NCSI CYP Steering Group Much has been achieved; we still have some distance to travel to reach the outcomes we have constantly Dr Gill Levitt described throughout our time working together in Co Chair of the NCSI CYP this initiative. Steering Group What you see reported here, is work in progress, and we have until the final workshop on 12 October 2011 to deliver on what we set out to achieve. Reading this publication and attendance at the workshop will give us all the opportunity to use the knowledge to reflect on what we have completed and the work still to be done. We look forward to sharing our progress with you for comments.” Professor Faith Gibson and Dr Gill Levitt Co Chairs of the NCSI CYP Steering Group Professor Faith Gibson Co Chair of the NCSI CYP Steering Group
  6. 6. 6 Models of care to achieve better outcomes for children and young people living with and beyond cancerAcknowledgementsWe continue to be sincerely grateful to all of ourtest and prototype sites for their tremendouscommitment and hard work during the courseof the National Cancer Survivorship Initiative.It has been a pleasure to work with them as wework towards producing practical and tangibleevidence to achieve the highest standards ofcare possible for those children and youngpeople living with and beyond cancer.Without the clinical leadership, practicalservice improvement, and project managementexpertise from our sites, this work would simplynot be possible.Thank you again for your contribution.On behalf of the NCSI CYP Steering GroupMarch 2011
  7. 7. “ All aftercare services need to be cost effective and delivered by the appropriate health care professional to ensure best use of skill mix and resources based on patient choice and being responsive to individual clinical, psychological and the practical needs of patients. Clinician in Late Effects ”
  8. 8. 8 Models of care to achieve better outcomes for children and young people living with and beyond cancerSection oneExecutive summaryIn brief, within this publication we have • Yorkshire Cancer Network/St James’ • The completion of three testing cyclesincluded information to tell the story so University Hospital, Leeds of a very successful educationfar from our testing. We have also • The Royal Marsden NHS programme led by Dr Ed Smith,articulated the evidence we expect to Foundation Trust Consultant in Clinical Oncology, Theprovide in time for our October 2011 • Sheffield Teaching Hospitals NHS Christie, Manchesterworkshop. Information is provided to Foundation Trust. • The completion of an evaluationillustrate the following: exercise of transition services led by Dr Examples of this work include: Gill Levitt, Consultant Paediatric1. The patient perspective. • Production of an exercise DVD by the Oncologist and Susan Mehta, Clinical2. Clinically agreed levels of care (see Addenbrookes team in Cambridge led Nurse Specialist (Long Term section 3, page 27). by Dr Helen Hatcher, Consultant in Follow-up) at Great Ormond Street3. Clinically agreed paediatric aftercare Medical and TYA Oncology Hospital. pathway (see section 2, page 14).4. Clinically agreed teenage and young adult aftercare pathway (see Test site Test site leads Focus of work section 2, page 20).5. Definitions and components of Birmingham Dr Helen Jenkinson • Treatment summary and models of care (see section 4, Children’s Test Site Lead care plan page 30). Hospital Sarah Tranter • Self-management /6. Interim evidence from our prototype NHS Service Improvement Facilitator remote monitoring sites (including details of the measures Foundation Bernie County • Aftercare planning and being applied). Trust Service Improvement Lead model of care. Self management and rapidWe held our most recent National re-entryChildren and Young People Workshop in • Aftercare planning andSeptember 2010 when we published an model of care. Telephoneoverview of the outcomes from our initial follow-upgroup of 10 sites based on the testingwork they had completed at that stage. Bristol Royal Dr Rachel Cox • Model of careYou can access this information at: Hospital for Test Site Lead • Shared care Children & and Paul Beynon • Patient experiencewww.improvement.nhs.uk/documents/ South West Project Manager • Treatment summary andCYP_Building_the_Evidence.pdf Paediatric Liz Alsbury care plan Oncology Shared Service Development ManagerThese 10 initial sites were: Care Network Peninsula Cancer Network• Birmingham Children’s Hospital Great Ormond Dr Gill Levitt • Care coordinator role NHS Foundation Trust Street Hospital Test Site Lead • Effective transition service• Brighton and Sussex University for Children Ramesh Modasia • Self-management Hospital NHS Trust NHS Trust Service Improvement Facilitator • Economic modelling• Bristol Royal Hospital for Children Nicky McCulloch and South West Paediatric Service Improvement Lead Oncology Shared Care Network• Cambridge University Hospitals Yorkshire Dr Adam Glaser • Shift to primary care/ NHS Trust Cancer Test Site lead and National Clinical shared care• The Christie NHS Foundation Trust Network/St Lead for NHS Improvement • Recall system• CLIC Sargent (3rd sector participant) James’ Geraint Hughes • Treatment summary• Great Ormond Street Hospital for University Service Improvement Facilitator and care plan Children NHS Trust Hospital, Leeds Carol Ferguson Deputy Cancer Network Director
  9. 9. Models of care to achieve better outcomes for children and young people living with and beyond cancer 9Since September 2010, we have been 4. To define the models of care, and the Key recommendations emerging fromredefining our work for the next 12 key components of models of care this work (as at March 2011)months up to the end of September 2011 5. To define practical and achievable key All aftercare services need to be costand we have established work with four indicators of quality to support the effective and delivered by the appropriatesites as part of a prototype phase. evidence for commissioners to provide health care professional to ensure best consistent, individualised care for use of skill mix and resources based onThe four sites we are working with as children and young people living with the principles listed below and theour prototype sites are: and beyond cancer evidence contained within this document. 6. To capture robust evidence to inform• Birmingham Children’s Hospital the commissioning process. 1. Patient choice and being responsive to NHS Foundation Trust individual clinical, psychological and• Bristol Royal Hospital for Children Expected outcomes by March 2011 practical needs is paramount and the and South West Paediatric In time for our national workshop on 29 basis for all aftercare. Oncology Shared Care Network March 2011, we will present our evidence 2. All aftercare services should be based• Great Ormond Street Hospital for so far as ‘work in progress’ and will then on consistent patient pathways as Children NHS Trust work towards providing consolidated defined in this document (to be further• Yorkshire Cancer Network/St evidence by the end of September for refined by the end of September 2011) James’ University Hospital, Leeds. presentation at our 12 October 2011 and all services commissioned on this national workshop. basis.Expected outcomes by the end of 3. All aftercare is based on safeSeptember 2011 Definitions of proposed models (stratified) levels of care as defined inThe six specific outcomes from these four of care this document (to be further refined bysites are based on testing out the Emerging from our testing work are four the end of September 2011).hypothesis that it is feasible across the 13 models of care: 4. A detailed treatment summary shouldCYP centres in England to achieve the be completed at the end of treatmentfollowing: 1. Traditional Principal Treatment Centre or at transition for all patients. (PTC) aftercare model. 5. A care plan (manually or electronically)1. An overall 20% reduction nationally in 2. Shared care model of aftercare where should be completed and given to all hospital based outpatient follow-up care is shared between the principal patients at appropriate stages of their appointments; that is – those patients treatment centre, shared care at local patient pathway (end of treatment and who are already routinely being hospitals or General Practitioner (GP) / at the stages of transition for followed up. primary care services. example).2. To consider the potential to identify a 3. A nurse-led model of care (that may 6. It is not sustainable to continue to percentage follow-up reduction in include variations such as a provide aftercare with traditional terms of clinically stratified levels of telephone/text message model of hospital based consultant-led follow- care and a focus on a reduction in aftercare). up appointments in the future in view unscheduled follow-up care. 4. A self-management model of of the growing numbers; models of3. To incrementally work towards aftercare. care need to be implemented that achieving a 100% target over a five actually shifts patients into alternative year period (tolerance level to be The detail and components of these four models of care (for example – agreed) of patients being provided models of care can be found in section discharged, shared care, a nurse-led with a treatment summary and care four, page 30. model of care or self-management). plan, that is on a prospective basis for those patients ending treatment, entering long-term follow-up, and at the transition stage.
  10. 10. 10 Models of care to achieve better outcomes for children and young people living with and beyond cancer7. To achieve a minimum 20% reduction Summary nationally in hospital based Since September 2010, there has been outpatient follow-up appointments tangible progress; this can be summarised (those patients already routinely in the following bullet point headings: followed up).8. All patients to be provided with • A shift from a testing to a prototype comprehensive information to enable phase those who are suitable to self- • Defined our expected measurable manage. outcomes for the CYP workstream (i.e.9. All patients should receive aftercare risk stratification using levels of care is services based on a core set of key essential to inform patient pathways indicators to be refined. and provide a basis for effective follow-10. An effective care coordinator function up models) should be in place to streamline the • Refined the measures so that we are in care for all patients. The way in which a position to demonstrate the Patricia Morris the care coordinator function is difference made for patients NHS Improvement Director - provided is for local implementation. • Developed and agreed consistent Cancer The care coordinator would need to patient pathways work as part of the local team with • Refining the definitions of the levels of agreed protocols and access to clinical care and quantify the potential impact advice from the appropriate health in terms of numbers of patients in each professionals. level by site11. Effective remote monitoring and alert • Defining 13 key recommendations to systems need to be in operation to support consistent aftercare for all CYP remind patients when specific survivors. screening / investigations are required.12. A pre-planned and co-ordinated Next steps approach is essential at all stages of NHS Improvement will continue to transition. support the NCSI in partnership with the13. Services need to be provided and Department of Health, Macmillan and our aligned with key national initiatives patient representatives. and standards for example CYP Improving Outcomes Guidance Our next CYP workshop will on 12 Judi Tapp (http://guidance.nice.org.uk/CSGCYP) October 2011, where we will be National Improvement Lead, and Children’s Cancer and Leukaemia presenting consolidated evidence from NHS Improvement Group (CCLG) www.cclg.org.uk the workstream.
  11. 11. “ The CYP workstream, working with clinicians, commissioners, patients and local teams have developed national pathways to take account of the financial pressures in the NHS and continue to meet the needs of survivors of cancer in the future. ” NHS Improvement Director
  12. 12. 12 Models of care to achieve better outcomes for children and young people living with and beyond cancerSection twoThe development of consistent patient pathways -commissioning a solutionIntroduction SummaryAs a starting premise, the long-term These pathways have been widelyprovision of follow-up for all cancer consulted upon, and represent the viewssurvivors in a hospital setting is not viable of a wide cross-section of healthor appropriate in the future given the professionals, patients and commissionersexponential increase in the numbers of as a basis to commission services in acancer survivors. consistent way in the future – with a recognition that services need to be bothTherefore, the CYP workstream, working clinically justified, affordable, and meetwith clinicians, commissioners, patients the needs of each patient during theirand local teams have developed a lifetime of care.national pathway that identifies howfollow-up for children and young peoplecan be delivered to take into accountcurrent NHS wide financial pressures inthe public sector and also continue tomeet the needs of our patients during thecoming years.The three pathways that we havedeveloped are shown on the followingpages, with practical scenarios to expandon the importance of aspects of thepathway, and why the service depicted inthese pathways should be commissioned.Pathways will need to be interpretedlocally dependent upon localcircumstances and resources.
  13. 13. Models of care to achieve better outcomes for children and young people living with and beyond cancer 13The children and young people pathway - commissioning a solutionTreatment for childhood cancer is Clinical consensus and expertise of By implementing such a pathway,associated with late sequelae which childhood cancer and the late effects commissioners can ensuredepend on the type of therapy the child of therapy indicate: patients are:has received. These effects vary with the • Although childhood cancer is rare, each • Empoweredcumulative dose and class of year approximately 1,400 new cases are • Given choice as to the nature of theirchemotherapy, site and dose of diagnosed follow upradiotherapy, age at start of treatment • Currently one in 640 young adults is a • Provided with care closer to homeand gender of the patient as well as survivor of childhood cancer and it is • Allowed easy access to support andgenetic and other factors. estimated that there are approximately advice 30,000 long-term survivors in the UK • Provided with co-ordinated, seamlessStakeholders within the Children and • After childhood cancer 60% of and efficient care.Young People National Cancer survivors who are five years or moreSurvivorship Initiative - have developed a from the completion of treatment will For therapy based long term follow upnational pathway that identifies how experience at least one or more late guidelines please refer to:follow up for children and young people effect of therapy. One third of these www.cclg.org.uk/researchandtreatment/can be delivered in line with current will be moderate or severe content.php?3id=29&2id=19pressures and aspirations. The pathway • Effects of cancer treatment may bebuilds upon the learning from varied delayed in onset and progressive andnational testing work and will help inform may worsen with the effects of ageingcommissioners of the requirements of and possibly environmental factors. Thechildren and young people living with need for long-term surveillance isand surviving cancer. clearly identified • Survivors of childhood cancer are atPressure for change increased risk of premature death. ThisThe long-term provision of follow-up for remains three-fold higher than that ofall survivors in hospital settings is simply the general population, even at 45unfeasible given the exponential increase years from diagnosis. The excessin survivors. mortality is mainly from second primary tumours, cardiac and pulmonary causesThe principles emerging from the • Radiotherapy and several types oftesting emphasises the chemotherapy (e.g. alkylators,importance of: epipodophyllotoxins) increase the risk• Providing patients with treatment of death from second primary cancers, summary and care plans whilst cardiac irradiation and high dose• Stratifying risk and signposting patients anthracyclines are associated with late to appropriate and tailored pathways cardiac death• Providing differing levels of care and • Infertility in adult survivors of childhood support based on risk assessment cancer remains one of the most• Providing care in an appropriate setting common and life-altering complications• Coordinating and supporting care experienced by adults treated for• Automated surveillance systems cancer during childhood. Surgery,• Fully supporting primary care within radiotherapy and certain types of any shared care arrangements chemotherapy may all impact• Managing transition between negatively on the reproductive paediatric, young adult and adult pathway, and even in those who services. remain fertile there may be an increased incidence of spontaneous abortion, preterm labour and low birthweight due to the effect of radiotherapy on uterine function.
  14. 14. 14 Models of care to achieve better outcomes for children and young people living with and beyond cancer Paediatric aftercare pathway Care coordinator conta Oncology Change in late relapse/SMN effects profile Treatment Risk assessment Diagnostic Aftercare Entry into long including psychosocial and treatment MDT term aftercare assessment care MDT planning Treatment Care plan summary including assigned level of care IT system IT system populated populated Pathway is followed in conjunction with agreed protocols and guidelines Frequency of foll Pathway Clinical and psychological care Treatment summ Transition Planning and level of care **There is a flexib CYP survivors from IT Systems TREATMENT PATHWAY
  15. 15. Models of care to achieve better outcomes for children and young people living with and beyond cancer 15 act located at HUB PTC Rapid re-entry for relapse and SMN at any point MDT along the pathway review Refer to palliative care pathway Aftercare planning and model of care Regular follow up Early and review of care plan adolescent review (locally Patient and parent defined) education and psychological support Clinical level of care MDT Tests and review review outpatients Consultant department **Transition Referral to at 16-18 years Clinical nurse specialist clinic to young specialist as required adult services Shared care local hospital **Transition at 24-25 years to adult services ow-up is determined by level of risk The title of the pathway relates to the age of diagnosismary and care plan is a living document to be updated at any event across the pathway bility with age range of transition (transition relates to purposeful and planned movement of m child and young adult to adult services)
  16. 16. 16Paediatric aftercare pathway scenario level 1 and 2 CARE COORDINATOR CONTACT LOCATED AT HUB PTC ENTRY INTO LONG-TERM TRANSITION 16-18 & ADULT FOLLOW UP AND DIAGNOSIS TREATMENT RISK ASSESSMENT AFTERCARE PLANNING AND MODEL OF CARE AFTERCARE (AFTER MDT) 24-25Y (AFTER MDT) RISK ASSESSMENT Acute Total doses Potential late effects: LEVEL 2 • Regular follow up and care plan review CLINICAL LEVEL OF Late effects absent LEVEL 1 Lymphoblastic Type of chemotherapy • Education parents and patient CARE or minimal GP automated surveillance Leukaemia • Cardio-toxicity • Psychosocial support ECHO five yearly Anthracyclines • Cognitive impairment • Tests and review in OPD Level 2 or 3 at PTC by: Care coordinator contact Alkylators • Psychological Consultant or CNS details Methotrexate (I.T, I.V, oral) • Neurological Tests: Thiopurines • Reduced bone density • ECHO 1-5 yearly OR Late effects Steroids # • Obesity • Height, weight, BMI 6-12 monthly moderate or severe • Second malignant • Stress thermometer Level 2 only: LEVEL 2 or 3 adult services # not an all inclusive list of tumour (SMN) • Psychometric testing* Shared care with local Care coordinator contact chemotherapy • Bone density scan (DEXA)* hospital: details • MRI if SMN suspected NO radiotherapy * where clinically indicated IT population of IT population of care plan Specialist referral: Early adolescent review IT population locally and treatment summary locally and web-based • Cardiologist web-based (password locally and web-based (password protection) • Psychologist/neurologist protection) (password protection) • Endocrinologist/dietician • Oncologist for relapse/SMN Rapid re-entry to start of pathway TREATMENT CARE PLAN INITIATED CARE PLANNING CARE PLAN REVIEWED AND UPDATED CARE PLAN UPDATED TREATMENT SUMMARY SUMMARY INCLUDING AND CARE PLAN ASSIGNED LEVEL UPDATED OF CAREKEY: BMI - Body Mass Index; CNS - Clinical nurse specialist; I.T - Intrathecal (via lumbar puncture); I.V - Intravenous; SMN - Second malignant neoplasm (tumour) OPD - Outpatient Department; MDT - Multidisciplinary team (meeting); PTC - Primary treatment centre; ECHO - Echocardiogram
  17. 17. Paediatric aftercare pathway scenario level 2 CARE COORDINATOR CONTACT LOCATED AT HUB PTC ENTRY INTO LONG-TERM TRANSITION 16-18 & ADULT FOLLOW UP AND DIAGNOSIS TREATMENT RISK ASSESSMENT AFTERCARE PLANNING AND MODEL OF CARE AFTERCARE (AFTER MDT) 24-25Y (AFTER MDT) RISK ASSESSMENT Unilateral Total doses Potential late effects: LEVEL 2 • Regular follow up and care plan review CLINICAL LEVEL OF Late effects minimal LEVEL 2 Wilms Tumour Type of chemotherapy • Education parents and patient CARE Adult services Stage III • Single kidney • Psychosocial support GP +/- CNS involvement Vincristine • Renal hyperfiltration • Tests and review in OPD LEVEL 2 at PTC by Automated surveillance Actinomycin - proteinuria Consultant or CNS Care coordinator details Anthracycline - hypertension Tests: • Cardiotoxicity • ECHO 1-5 yearly OR Late effects Adult services Nephrectomy • Scoliosis • Height, weight, BMI 6-12 monthly moderate or severe Care coordinator details • Hepatotoxicity • Blood pressure LEVEL 2 by shared care Radiotherapy to unilateral (usually reversible) • Urine analysis flank • SMN • Stress thermometer • Renal function tests as clinically indicated • Liver function as clinically indicated IT population of IT population of care plan Specialist referral: Early adolescent review IT population locally and treatment summary locally and web-based • Nephrologist web-based (password locally and web-based (password protection) • Cardiologist protection) (password protection) including risk assessment • Orthopaedic • Oncologist for relapse/SMN Rapid re-entry to start of pathway TREATMENT CARE PLAN INITIATED CARE PLANNING CARE PLAN REVIEWED AND UPDATED CARE PLAN UPDATED TREATMENT SUMMARY SUMMARY INCLUDING AND CARE PLAN ASSIGNED LEVEL UPDATED OF CAREKEY: BMI - Body Mass Index; CNS - Clinical nurse specialist; SMN - Second malignant neoplasm (tumour); OPD - Outpatient Department; MDT - Multidisciplinary team (meeting); PTC - Primary treatment centre; ECHO - Echocardiogram. 17
  18. 18. 18Paediatric aftercare pathway scenario level 3 CARE COORDINATOR CONTACT LOCATED AT HUB PTC ENTRY INTO LONG-TERM TRANSITION 16-18 & ADULT FOLLOW UP AND DIAGNOSIS TREATMENT RISK ASSESSMENT AFTERCARE PLANNING AND MODEL OF CARE AFTERCARE (AFTER MDT) 24-25Y (AFTER MDT) RISK ASSESSMENT Relapsed or Bone Marrow Potential late effects: LEVEL 3 • Education parents and patient CLINICAL LEVEL OF Late effects usually LEVEL 3 high risk Transplantation (BMT) Endocrine dysfunction • Psychosocial support CARE moderate or severe Adult services leukaemia • Impaired growth and • Tests and review in OPD Monitoring annually Increased total doses of pubertal maturation • Joint endocrine review six monthly as At PTC in consultant lead Care coordinator details multi-agent chemotherapy • Infertility often need hormonal treatments clinic by: and radiotherapy. • Diabetes/thyroid/ parathyroid/metabolic Tests: Consultant Total body irradiation syndrome/osteoporosis • Height, weight BMI six monthly Organ dysfunction • Stress thermometer OR • Cardiotoxicity and • Routine blood tests annually increased cardiovascular risk (haematology, blood biochemistry, lipids, CNS • Renal/pulmonary impairment thyroid, ovarian and testicular function) Cataracts/hearing loss/dental damage • Special endocrine tests – e.g. pituitary • Cognitive/neurological/ function psychological impairment Other • ECHO 1-5 yearly • GVHD of skin/gut/l/oral/liver • Lung function 1-5 yearly • Secondary malignancy (SMN) • DEXA bone density scan 2-5 yearly and benign tumours • MRI if SMN suspected • Immunological dysfunction IT population of IT population of care plan Specialist referral: Review throughout IT population locally and treatment summary locally and web-based • Endocrinologist/nephrologist adolescence web-based (password locally and web-based (password protection) • Cardiologist/respiratory protection) (password protection) • Psychologist/neurologist • Opthalmologist/audiologist/dental • Dermatologist/orthopaedic • Reproductive • Oncologist for relapse/SMN Rapid re-entry to start of pathway or palliative care TREATMENT CARE PLAN INITIATED CARE PLANNING CARE PLAN REVIEWED AND UPDATED CARE PLAN UPDATED TREATMENT SUMMARY SUMMARY INCLUDING AND CARE PLAN ASSIGNED LEVEL UPDATED OF CAREKEY: BMI - Body Mass Index; CNS - Clinical nurse specialist; SMN - Second malignant neoplasm (tumour); OPD - Outpatient Department; MDT - Multidisciplinary team (meeting); PTC - Primary treatment centre; ECHO - Echocardiogram; BMT - Bone Marrow Transplantation.
  19. 19. “ All children and young people who are cancer survivors should expect to receive the same, high quality standard of individualised care irrespective of where and when they are treated. Alex Brownsdon, Patient Representative NCSI CYP Steering Group (March 2011) ”
  20. 20. 20 Models of care to achieve better outcomes for children and young people living with and beyond cancer Teenage and young adult aftercare pathway Level 1 and 2 supported self management and planned coordinated care pat Care coordinator function and automat Relapse - Change in late oncology/SMN effects profile Treatment Risk assessment Diagnostic Aftercare Entry into long including psychosocial and treatment MDT term aftercare assessment care MDT planning Treatment Care plan summary including assigned level of care IT system IT system populated populated Pathway Clinical and psychological care Frequency of follow-up is determined Transition Planning and level of care ***There is flexibility to transfer throu Both level 1 and 2 supported self man IT Systems Level 2 planned coordinated care Treatment summary and care plan is a TREATMENT PATHWAY
  21. 21. Models of care to achieve better outcomes for children and young people living with and beyond cancer 21thwaysted surveillance system by HUB PTC Rapid re-entry for relapse and SMN at any point MDT along the pathway review Refer to palliative care pathway Aftercare planning and model of care Regular follow up and review of care plan MDT Patient and parent education review and psychological support Clinical level of care **Transition Tests and review at 16-18 years Consultant outpatients department to young (level 2 only) adult services CNS +/- **Transition telephone Referral to specialist at 24-25 years follow up clinic as required to adult Shared care services local hospital Survivorship programmes ***Transfer GP (>18) to level 1, 2 or 3 Self pathway management Exercise programmesby level of risk **There is a flexibility with age range of transition (transition relates to purposeful and planned movement of CYP survivors from child and young adult to adult services)ugh levels of care on the pathways Level 2 planned coordinated careagement and planned coordinated care living document to be updated at any event across the pathway The title of the pathway relates to the age of diagnosis
  22. 22. 22Teenage and young adult aftercare pathway scenario level 1 CARE COORDINATOR CONTACT LOCATED AT HUB PTC ENTRY INTO LONG-TERM TRANSITION 16-18 & ADULT FOLLOW UP AND DIAGNOSIS TREATMENT RISK ASSESSMENT AFTERCARE PLANNING AND MODEL OF CARE AFTERCARE (AFTER MDT) 24-25Y (AFTER MDT) RISK ASSESSMENT Ovarian Germ Surgical removal of Potential late effects: LEVEL 1 • Review with care plan CLINICAL LEVEL OF Late effects unlikely LEVEL 1 Cell Tumour tumour • Education parents and patient CARE GP Stage I • Surgical complications • Psychosocial support Care coordinator contact (Age 13 only eg adhesions • Tests and review in OPD At PTC by: details years) Automated surveillance Tests (minimal): CNS only if required • Ovarian function assessed • Height and weight OR • Stress thermometer • Chromosomes in selected cases Shared care with local hospital Survivorship programme if appropriate IT population of IT population of care plan Specialist referral: IT population locally and treatment summary locally and web-based • Unlikely to be needed web-based (password locally and web-based (password protection) • Oncologist for relapse/SMN protection) (password protection) Rapid re-entry to start of pathway TREATMENT CARE PLAN INITIATED CARE PLANNING CARE PLAN REVIEWED AND UPDATED CARE PLAN UPDATED TREATMENT SUMMARY SUMMARY INCLUDING AND CARE PLAN ASSIGNED LEVEL UPDATED OF CAREKEY: CNS - Clinical nurse specialist; SMN - Second malignant neoplasm (tumour); OPD - Outpatient Department; MDT - Multidisciplinary team (meeting); PTC - Primary treatment centre.
  23. 23. Teenage and young adult aftercare pathway scenario level 2 CARE COORDINATOR CONTACT LOCATED AT HUB PTC ENTRY INTO LONG-TERM TRANSITION 16-18 & ADULT FOLLOW UP AND DIAGNOSIS TREATMENT RISK ASSESSMENT AFTERCARE PLANNING AND MODEL OF CARE AFTERCARE (AFTER MDT) 24-25Y (AFTER MDT) RISK ASSESSMENT Hodgkins Type chemotherapy Potential late effects but low LEVEL 2 • Regular follow up and review of CLINICAL LEVEL OF Mild late effects only LEVEL 2 Disease doses make these less likely: care plan CARE expected as low doses of Adult services Stage II Low total doses of: • Education patient and parent chemotherapy- Automated surveillance (neck and • Cardiotoxicity • Psychosocial support at PTC by: radiotherapy GP mediastinal Vincristine • Soft tissue hypoplasia (neck) • Tests and review in OPD CNS +/- telephone involvement) Etoposide • Carotid and coronary artery Consultant follow-up Anthracycline stenosis/vascultis Tests: Specialist breast screening Female age Alkylators • Lung fibrosis • Height and weight OR Care coordinator details 14 years - procarbazine • Hypothyroidism • Menstrual history - cyclophos-phamide • Early menopause • Stress thermometer CNS +/- telephone Steroids • SMN • ECHO 1-5 yearly follow-up • Thyroid function tests Radiotherapy to involved • LH, FSH, oestrogen OR field of disease • Thyroid U/S (if indicated) • Carotid Doppler U/S (if indicated) Shared care hospital • ECG (if indicated) • MRI if SMN suspected OR Survivorship programme GP (when >18 years) Exercise programme IT population of IT population of care plan Specialist referral: IT population of updated treatment summary locally and web-based • Cardiologist care plan locally and web-based (password protection) • Endocrinologist (password protection) including risk assessment • Reproductive specialist • Neurologist/vascular specialist • Oncologist if relapse/SMN Rapid re-entry to start of pathway TREATMENT CARE PLAN INITIATED CARE PLANNING CARE PLAN REVIEWED AND UPDATED CARE PLAN UPDATED TREATMENT SUMMARY SUMMARY INCLUDING AND CARE PLAN ASSIGNED LEVEL UPDATED OF CAREKEY: CNS - Clinical nurse specialist; SMN - Second malignant neoplasm (tumour); ECHO - Echocardiogram; OPD - Outpatient Department; MDT - Multidisciplinary team (meeting); PTC - Primary treatment centre. 23
  24. 24. 24 Models of care to achieve better outcomes for children and young people living with and beyond cancer Teenage and young adult aftercare pathway Level 3 complex care Care coordinator function and automa Relapse - Change in late oncology/SMN effects profile Treatment Risk assessment Diagnostic Aftercare Entry into long including psychosocial and treatment MDT term aftercare assessment care MDT planning Treatment Care plan summary including assigned level of care IT system IT system populated populated Pathway Clinical and psychological care Frequency of follow-up is determ Transition Planning and level of care ***There is flexibility to transfer t Treatment summary and care plan IT Systems TREATMENT PATHWAY
  25. 25. Models of care to achieve better outcomes for children and young people living with and beyond cancer 25ted surveillance system by HUB PTC Rapid re-entry for relapse and SMN at any point MDT along the pathway review Refer to palliative care pathway Aftercare planning and model of care Regular follow up and review of care plan MDT Patient and parent education review and psychological support Clinical level of care **Transition Tests and review at 16-18 years Consultant outpatients department to young with adult services automated surveillance **Transition as required Referral to specialist at 24-25 years clinic as required to adult services Survivorship programmes ***Transfer to level 1 or 2 Exercise programmes pathwayined by level of risk **There is a flexibility with age range of transition (transition relates to purposeful and planned movement of CYP survivors from child and young adult to adult services)through levels of care on the pathwaysn is a living document to be updated at any event across the pathway The title of the pathway relates to the age of diagnosis
  26. 26. 26Teenage and young adult aftercare pathway scenario level 3 CARE COORDINATOR CONTACT LOCATED AT HUB PTC ENTRY INTO LONG-TERM TRANSITION 16-18 & ADULT FOLLOW UP AND DIAGNOSIS TREATMENT RISK ASSESSMENT AFTERCARE PLANNING AND MODEL OF CARE AFTERCARE (AFTER MDT) 24-25Y (AFTER MDT) RISK ASSESSMENT Bladder Type and cumulative doses Potential late effects: LEVEL 3 • Regular follow up and review of CLINICAL LEVEL OF Severe late effects Level 3 Rhabdomyo- of of chemotherapy care plan CARE sarcoma (male • Renal • Education patient and parent Adult services adolescent) Ifosfamide - Tubular dysfunction • Psychosocial support at PTC Care coordinator details Vincristine - Reduced GFR (rare) • Tests and review in OPD Actinomycin D • Infertility Consultant Led Anthracycline • Erectile dysfunction Tests: • Psychosexual • Height, weight Pelvic radiotherapy • Surgical complications • Blood pressure • Rectal bleeding • Urine analysis Surgery-excision of • cardiotoxicity • Stress thermometer bladder & mitrofanoff • SMN • Sexual function history procedure • LH, FSH, Testosterone baseline and as clinically indicated • Urea and electrolytes and creatinine and bone profile annually/biannnually • TRP baseline and as clinically indicated • GFR baseline & as clinically indicated • LFT’s as clinically indicated • ECHO five yearly Survivorship programme Exercise programme IT population of IT population of care plan Specialist referral: IT population of updated treatment summary locally and web-based • Urologist/nephrologist care plan locally and web-based (password protection) • Psychosexual counsellor (password protection) including risk assessment • Reproductive specialist • Gastroenterologist • Cardiologist • Oncologist if relapse/SMN Rapid re-entry to start of pathway TREATMENT CARE PLAN INITIATED CARE PLANNING CARE PLAN REVIEWED AND UPDATED CARE PLAN UPDATED TREATMENT SUMMARY SUMMARY INCLUDING AND CARE PLAN ASSIGNED LEVEL UPDATED OF CAREKEY: CNS - Clinical nurse specialist; SMN - Second malignant neoplasm (tumour); ECHO - Echocardiogram; OPD - Outpatient Department; MDT - Multidisciplinary team (meeting); PTC - Primary treatment centre.
  27. 27. Models of care to achieve better outcomes for children and young people living with and beyond cancer 27Section threeChildren and Young People National CancerSurvivorship Initiative - Levels of CareThis is ongoing work, has yet to befinalised, and takes into account the needfor flexibility and interpretation at a local L1level.With the rapidly enlarging cohort ofsurvivors it is becoming vital to look fordifferent models of care to provideappropriate care. Risk stratification using L2levels of care is essential to inform patientpathways and provide a basis for effectivefollow-up models.Survivors of cancer may develop chronicconditions. The use of the chronic L3disease model of different levels of carefits well with our idea that levels of carecan be stratified by risk of developingconsequences or requiring on goingmanagement. Risk stratification - isbased on disease, type of treatment,gender, age and psychosocial needs ofthe patient at the time of treatment andat the time points along the journey alevel is assigned and at the specific timepoints. LEVEL 1Within the CCLG, the late effects group Characteristics may include:published levels of care as a means of No routine outpatient attendancesdeveloping strategies for long term Information on prescription and/or an educational interventionfollow-up in this expanding population of Automated surveillance tests with results by telephone or postsurvivors. The levels were supported up Ability to reaccess system with/without reference to GPby an earlier publication updated in 2005on Therapy based long term follow up: LEVEL 2Practice Statement. Updated in 2005 by Characteristics may include:Skinner R, Wallace WHB, Levitt GA, eds. Planned review of care e.g. hospital, community, face to face or telephoneTherapy based long term follow up: Clinical examination if requiredPractice Statement. United Kingdom Patients with co-morbiditiesChildren’s Cancer Study Group, 2005. Those who are unable/decline to self manage(available online atwww.ukccsg.org.uk/public/followup/Pract LEVEL 3iceStatement/index.html). Characteristics may include: Complex rapidly changing health Complex treatment complications or symptomatic needs Complex ongoing treatment regimes Other input required e.g. cardiology, haematology, gastroenterology Requiring regular MDT reviews
  28. 28. 28 Models of care to achieve better outcomes for children and young people living with and beyond cancerThe original Wallace levels of care were astatic measure. Experience has shown Possible levels of follow-up more than five years fromthat at different time points movement completion of treatmentbetween levels may be required andoccur in both directions. Good patient Level Treatment Method of Frequency Examples ofeducation, ease of access back into the follow-up Tumourslong term follow up (LTFU) service would 1 • Surgery alone Postal or 1-2 years • Wilms Stage I/IIallow more patients to self manage and • Low risk telephone • Gem cell tumourstherefore be stratified to a lower level; in chemotherapy (surgery onlyaddition automatic recall for tests such as • LCH (single systemechocardiograph (ECHOs) investigation, disease)urinalysis, Blood pressure (BP) monitoring,and second tumour surveillance would 2 • Chemotherapy Nurse (with late 1-2 years Majority of patientssupport the movement. • Low dose cranial effects (e.g. All in first irradation experience) or remission)Work has been undertaken to try and (<24Gy) primary care ledaddress the static nature of the originalversion of the levels, to fit it into the 3 • Radiotherapy, Medically Annual • Brain tumourschronic disease model and to take into except low dose supervised late • Post BMTaccount the improved support for cranial irradation effects clinic • Stage 4 patientssurvivors (patient programmes, treatment • Megatherapy (any tumour types)summaries, care plans etc). ORGINAL WALLACE VERSION (Wallace, WHB, Developing strategies for long-termAn expanded version of the Wallace levels follow-up of survivors of childhood cancer. BMJ 2001;323: 271-274)has now been developed through aconsultation process with the NCSI Level 2: • Advice re investigations/monitoringClinical Leads and the teams from our • As per Wallace table (above) but from specialist centre (details in careprototype sites in February 2011. include those previously exposed to plan) radiation (other than TBI and brain 24+ • These patients may need recall forLevels of care Gy/spinal tumour radiation who will be specialist surveillance at intervals, e.g.Level 1: level 3) e.g. CNS with expertise in late Pituitary function assessments in cranial• No routine specialist follow-up effects or informed GP irradiated leukaemia patients• Primary care led support • Patients requiring psychological support • Named key-worker at specialist centre• Advice re: investigations/monitoring would be in this level. provided to support patient and their from specialist centre (details in care • Patients with cancer genetic primary care. plan) predisposition importantly this may• Investigations/monitoring at this level become apparent at any time along the Level 3: would be tests that primary care would pathway. e.g. Li-Fraumeni, DICER 1 Doctor or nurse with late effects expertise routinely do on their other patients, should be referred to the appropriate as per table, with exception of: e.g. urinalysis, BP monitoring, ECHOs expert e.g. genetics • Those transferred to level 2 (see above),• Only abnormal results should be • Additional screening/information would • Multiple relapses or multiple second notified to the care coordinator at the then be organised via this service primary malignancies PTC • Follow-up interval will be variable • Those with learning difficulties or other• Include Acute Lymphoblastic Leukaemia dependent upon need reasons where there is clinical concern (A.L.L.) with no radiation, all others • Optimum care = 1 or 2 yearly virtual that lower intensity of follow-up may with low/moderate dose chemotherapy review of patients at specialist centre not provide safe and appropriate care and no predicted significant late risk particularly if new information becomes • Those already showing late effects e.g. of morbidity. available cardiovascular. • Local surveillance similar proviso as for level 1

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