models of care to achieve better outcomes for children and young people living with and beyond...

NHSNHS Improvement

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

Cancer

HEART LUNGCANCER DIAGNOSTICS STROKE

Front cover: Photographs of some of our prototypeteams, national patient representatives and Macmillan.

Foreword

Acknowledgements

Section oneExecutive summary

Section twoThe development of consistent patient pathways

Section threeLevels of care and risk stratification

Section fourProposed models of care

Section fiveComponents to support the models of care

Section sixDefining quality through key indicators

Section sevenUsing measures to achieve improvement

Section eightOur evidence so far

Section nineKey recommendations emerging from this work to date (March 2011)

References

Contents

Models of care to achieve better outcomes for children and young people living with and beyond cancer 3

4

6

8

12

27

30

33

37

38

40

45

46

Models of care to achieve better outcomes for children and young people living with and beyond cancer4

Setting the sceneAll children and young people (CYP) who are cancersurvivors should expect to receive the same, highquality standard of individualised care irrespective ofwhere and when they are treated, their type ofcancer or stage of disease. Consistency in the carepathways delivered to them is therefore of paramountimportance in order to achieve this expected aim.

Clinical risk stratification is also extremely importantin providing individualised care tailored to the clinical,psychosocial and practical needs of each CYP cancersurvivor. We recognise as the number of CYP cancersurvivors increase, it will not be possible oreconomically viable to follow-up every cancersurvivor in the way that has become accepted. Whilemany CYP cancer survivors will need to attendhospital appointments, others may benefit frommore remote follow-up methods including telephoneand text messaging. The follow-up of all CYP cancersurvivors is still extremely important but the way inwhich this happens can now be re-evaluated in linewith modern technology, offering many youngpeople a more practical and maybe more acceptableapproach to their ongoing care.

Such high quality care throughout CYP cancerssurvivors’ lifetime is essential in achieving a successfullong-term outcome. Health professionals have aresponsibility to consider the treatment delivered inconjunction with the long-term potential effects thiswill have on the rest of the young person’s lifeincluding normal development, independent livingand academic and social achievements. Providingappropriate models of follow-up care and ensuringthat cancer survivors have access to adequatesupport and advice throughout their lives isfundamental to maximising long-term patient wellbeing.

In order to be appropriately implemented and actedupon, the models of care delivered to CYP cancersurvivors must be clearly set out to commissioners.They must also be realistic in terms of cost to ensuresustainability and to meet the needs of all patients inthe light of the current NHS financial pressures. It isimportant too that the models of care are able tomeet the individual needs of the CYP cancer survivorsthemselves and not just what the healthcare

Foreword

The importance of the ‘right care’A patient representative, health professional and childhood cancer survivor’s perspective.

professionals and commissioners believe are theneeds. Whatever models are developed, they mustmake sense to young people, that it is clear withinthe model of care what support is available for themto continue to get on with their lives.

What it might mean to young peopleI feel that all CYP cancer survivors should receiveindividualised care that is tailored to meet their ownpersonal needs. It is essential that all CYP cancersurvivors are kept informed about their illness with alevel of information appropriate to them that isupdated when necessary. This can empower CYPcancer survivors to play an active role in their owncare by facilitating educated discussion with healthcare professionals about their treatment and ongoingcare. Being appropriately well informed could alsoassist with responsible self-management, andpromote the opportunity for choice and control in asituation where there has previously been very little.

Treatment summaries will be a useful tool for CYPcancer survivors and will avoid them continuallyhaving to repeat their medical history to new healthprofessionals. Having this information should alsoincrease knowledge of what has happened, with anagreed care plan helping young people tounderstand the ongoing care they may need andhow they can take responsibility for how they lookafter themselves and make health and life choices.Care should be taken however, that this informationis not used in a negative way against the survivorsand that confidentiality is maintained. Transition isalso an extremely important part of follow-up careand should be consistent across all models. Inaddition, transition should also be consistent withclinical risk stratified care to ensure that this iscontinued from childhood into adulthood. It is alsoimportant that patient transition is carried out byproactive, well-informed health professionals tomaintain a smooth transition of care. Long-termfollow-up care of CYP cancer survivors would also begreatly aided by having access to a care coordinatorfunction to provide a reliable support resource for allCYP cancer survivors throughout their lives andcancer journey.

Alexandra BrownsdonPatient Representative NCSICYP Steering Group


Patient representation has formed an integral andvaluable part of the National Cancer SurvivorshipInitiative (NCSI) CYP Steering Group’s work and CYPcancer survivors have contributed to shaping thedirection of this work by providing constructive andpractical input based on their own, first handexperiences. It has been extremely important for CYPcancer survivors, as service users, to express theirvoice in how the new models of care are developedas this has enabled survivor’s views to inform the carethat will directly affect this cohort in the future.

Alexandra BrownsdonPatient Representative NCSI CYP Steering Group

Response from the Co Chairs of theNCSI CYP Steering Group“Thank you to Alex for setting the scene and placingthis latest publication in context of both what isimportant for young cancer survivors as well aswhere test site activity has moved to. We are muchappreciative of the work of young people like Alex,members of the NCSI CYP Steering Group, and theyoung people and other family members whocontinue to contribute to the test site steeringgroups. It is their input, and the input of committedprofessionals that has facilitated the progress you seedocumented here.

Much has been achieved; we still have some distanceto travel to reach the outcomes we have constantlydescribed throughout our time working together inthis initiative.

What you see reported here, is work in progress,and we have until the final workshop on 12 October2011 to deliver on what we set out to achieve.Reading this publication and attendance at theworkshop will give us all the opportunity to use theknowledge to reflect on what we have completedand the work still to be done.

We look forward to sharing our progress with youfor comments.”

Professor Faith Gibson and Dr Gill LevittCo Chairs of the NCSI CYP Steering Group

Dr Gill LevittCo Chair of the NCSI CYPSteering Group

Professor Faith GibsonCo Chair of the NCSI CYPSteering Group


We 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

Acknowledgements

All aftercare services needto be cost effective anddelivered by the appropriatehealth care professional toensure best use of skill mixand resources based onpatient choice and beingresponsive to individualclinical, psychological andthe practical needs ofpatients.Clinician in Late Effects

“

”


In brief, within this publication we haveincluded information to tell the story sofar from our testing. We have alsoarticulated the evidence we expect toprovide in time for our October 2011workshop. Information is provided toillustrate the following:

1. The patient perspective.2. Clinically agreed levels of care (see

section 3, page 27).3. Clinically agreed paediatric aftercare

pathway (see section 2, page 14).4. Clinically agreed teenage and young

adult aftercare pathway (seesection 2, page 20).

5. Definitions and components ofmodels of care (see section 4,page 30).

6. Interim evidence from our prototypesites (including details of the measuresbeing applied).

We held our most recent NationalChildren and Young People Workshop inSeptember 2010 when we published anoverview of the outcomes from our initialgroup of 10 sites based on the testingwork they had completed at that stage.You can access this information at:

www.improvement.nhs.uk/documents/CYP_Building_the_Evidence.pdf

These 10 initial sites were:

• Birmingham Children’s HospitalNHS Foundation Trust

• Brighton and Sussex UniversityHospital NHS Trust

• Bristol Royal Hospital for Childrenand South West PaediatricOncology Shared Care Network

• Cambridge University HospitalsNHS Trust

• The Christie NHS Foundation Trust• CLIC Sargent (3rd sector participant)• Great Ormond Street Hospital for

Children NHS Trust

Section one

• Yorkshire Cancer Network/St James’University Hospital, Leeds

• The Royal Marsden NHSFoundation Trust

• Sheffield Teaching Hospitals NHSFoundation Trust.

Examples of this work include:• Production of an exercise DVD by the

Addenbrookes team in Cambridge ledby Dr Helen Hatcher, Consultant inMedical and TYA Oncology

Test site

BirminghamChildren’sHospitalNHSFoundationTrust

Bristol RoyalHospital forChildren & andSouth WestPaediatricOncology SharedCare Network

Great OrmondStreet Hospitalfor ChildrenNHS Trust

YorkshireCancerNetwork/StJames’UniversityHospital, Leeds

Test site leads

Dr Helen JenkinsonTest Site LeadSarah TranterService Improvement FacilitatorBernie CountyService Improvement Lead

Dr Rachel CoxTest Site LeadPaul BeynonProject ManagerLiz AlsburyService Development ManagerPeninsula Cancer Network

Dr Gill LevittTest Site LeadRamesh ModasiaService Improvement FacilitatorNicky McCullochService Improvement Lead

Dr Adam GlaserTest Site lead and National ClinicalLead for NHS ImprovementGeraint HughesService Improvement FacilitatorCarol FergusonDeputy Cancer Network Director

Focus of work

• Treatment summary andcare plan

• Self-management /remote monitoring

• Aftercare planning andmodel of care. Selfmanagement and rapidre-entry

• Aftercare planning andmodel of care. Telephonefollow-up

• Model of care• Shared care• Patient experience• Treatment summary and

care plan

• Care coordinator role• Effective transition service• Self-management• Economic modelling

• Shift to primary care/shared care

• Recall system• Treatment summary

and care plan

Executive summary

• The completion of three testing cyclesof a very successful educationprogramme led by Dr Ed Smith,Consultant in Clinical Oncology, TheChristie, Manchester

• The completion of an evaluationexercise of transition services led by DrGill Levitt, Consultant PaediatricOncologist and Susan Mehta, ClinicalNurse Specialist (Long TermFollow-up) at Great Ormond StreetHospital.


Expected outcomes by the end ofSeptember 2011The six specific outcomes from these foursites are based on testing out thehypothesis that it is feasible across the 13CYP centres in England to achieve thefollowing:

1. An overall 20% reduction nationally inhospital based outpatient follow-upappointments; that is – those patientswho are already routinely beingfollowed up.

2. To consider the potential to identify apercentage follow-up reduction interms of clinically stratified levels ofcare and a focus on a reduction inunscheduled follow-up care.

3. To incrementally work towardsachieving a 100% target over a fiveyear period (tolerance level to beagreed) of patients being providedwith a treatment summary and careplan, that is on a prospective basis forthose patients ending treatment,entering long-term follow-up, and atthe transition stage.

4. To define the models of care, and thekey components of models of care

5. To define practical and achievable keyindicators of quality to support theevidence for commissioners to provideconsistent, individualised care forchildren and young people living withand beyond cancer

6. To capture robust evidence to informthe commissioning process.

Expected outcomes by March 2011In time for our national workshop on 29March 2011, we will present our evidenceso far as ‘work in progress’ and will thenwork towards providing consolidatedevidence by the end of September forpresentation at our 12 October 2011national workshop.

Definitions of proposed modelsof careEmerging from our testing work are fourmodels of care:

1. Traditional Principal Treatment Centre(PTC) aftercare model.

2. Shared care model of aftercare wherecare is shared between the principaltreatment centre, shared care at localhospitals or General Practitioner (GP) /primary care services.

3. A nurse-led model of care (that mayinclude variations such as atelephone/text message model ofaftercare).

4. A self-management model ofaftercare.

The detail and components of these fourmodels of care can be found in sectionfour, page 30.

Key recommendations emerging fromthis work (as at March 2011)All aftercare services need to be costeffective and delivered by the appropriatehealth care professional to ensure bestuse of skill mix and resources based onthe principles listed below and theevidence contained within this document.

1. Patient choice and being responsive toindividual clinical, psychological andpractical needs is paramount and thebasis for all aftercare.

2. All aftercare services should be basedon consistent patient pathways asdefined in this document (to be furtherrefined by the end of September 2011)and all services commissioned on thisbasis.

3. All aftercare is based on safe(stratified) levels of care as defined inthis document (to be further refined bythe end of September 2011).

4. A detailed treatment summary shouldbe completed at the end of treatmentor at transition for all patients.

5. A care plan (manually or electronically)should be completed and given to allpatients at appropriate stages of theirpatient pathway (end of treatment andat the stages of transition forexample).

6. It is not sustainable to continue toprovide aftercare with traditionalhospital based consultant-led follow-up appointments in the future in viewof the growing numbers; models ofcare need to be implemented thatactually shifts patients into alternativemodels of care (for example –discharged, shared care, a nurse-ledmodel of care or self-management).

Since September 2010, we have beenredefining our work for the next 12months up to the end of September 2011and we have established work with foursites as part of a prototype phase.

The four sites we are working with asour prototype sites are:

• Birmingham Children’s HospitalNHS Foundation Trust

• Bristol Royal Hospital for Childrenand South West PaediatricOncology Shared Care Network

• Great Ormond Street Hospital forChildren NHS Trust

• Yorkshire Cancer Network/StJames’ University Hospital, Leeds.


7. To achieve a minimum 20% reductionnationally in hospital basedoutpatient follow-up appointments(those patients already routinelyfollowed up).

8. All patients to be provided withcomprehensive information to enablethose who are suitable to self-manage.

9. All patients should receive aftercareservices based on a core set of keyindicators to be refined.

10.An effective care coordinator functionshould be in place to streamline thecare for all patients. The way in whichthe care coordinator function isprovided is for local implementation.The care coordinator would need towork as part of the local team withagreed protocols and access to clinicaladvice from the appropriate healthprofessionals.

11.Effective remote monitoring and alertsystems need to be in operation toremind patients when specificscreening / investigations are required.

12.A pre-planned and co-ordinatedapproach is essential at all stages oftransition.

13.Services need to be provided andaligned with key national initiativesand standards for example CYPImproving Outcomes Guidance(http://guidance.nice.org.uk/CSGCYP)and Children’s Cancer and LeukaemiaGroup (CCLG) www.cclg.org.uk

SummarySince September 2010, there has beentangible progress; this can be summarisedin the following bullet point headings:

• A shift from a testing to a prototypephase

• Defined our expected measurableoutcomes for the CYP workstream (i.e.risk stratification using levels of care isessential to inform patient pathwaysand provide a basis for effective follow-up models)

• Refined the measures so that we are ina position to demonstrate thedifference made for patients

• Developed and agreed consistentpatient pathways

• Refining the definitions of the levels ofcare and quantify the potential impactin terms of numbers of patients in eachlevel by site

• Defining 13 key recommendations tosupport consistent aftercare for all CYPsurvivors.

Next stepsNHS Improvement will continue tosupport the NCSI in partnership with theDepartment of Health, Macmillan and ourpatient representatives.

Our next CYP workshop will on 12October 2011, where we will bepresenting consolidated evidence fromthe workstream.

Patricia MorrisNHS Improvement Director -Cancer

Judi TappNational Improvement Lead,NHS Improvement

The CYP workstream,working with clinicians,commissioners, patients andlocal teams have developednational pathways to takeaccount of the financialpressures in the NHS andcontinue to meet the needsof survivors of cancer in thefuture.

NHS Improvement Director

“

”

IntroductionAs a starting premise, the long-termprovision of follow-up for all cancersurvivors in a hospital setting is not viableor appropriate in the future given theexponential increase in the numbers ofcancer survivors.

Therefore, the CYP workstream, workingwith clinicians, commissioners, patientsand local teams have developed anational 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.

Section two

SummaryThese pathways have been widelyconsulted upon, and represent the viewsof a wide cross-section of healthprofessionals, patients and commissionersas a basis to commission services in aconsistent way in the future – with arecognition that services need to be bothclinically justified, affordable, and meetthe needs of each patient during theirlifetime of care.

The development of consistent patient pathways -commissioning a solution


Treatment for childhood cancer isassociated with late sequelae whichdepend on the type of therapy the childhas received. These effects vary with thecumulative dose and class ofchemotherapy, site and dose ofradiotherapy, age at start of treatmentand gender of the patient as well asgenetic and other factors.

Stakeholders within the Children andYoung People National CancerSurvivorship Initiative - have developed anational pathway that identifies howfollow up for children and young peoplecan be delivered in line with currentpressures and aspirations. The pathwaybuilds upon the learning from variednational testing work and will help informcommissioners of the requirements ofchildren and young people living withand surviving cancer.

Pressure for changeThe long-term provision of follow-up forall survivors in hospital settings is simplyunfeasible given the exponential increasein survivors.

The principles emerging from thetesting emphasises theimportance of:• Providing patients with treatment

summary and care plans• Stratifying risk and signposting patients

to appropriate and tailored pathways• Providing differing levels of care and

support based on risk assessment• Providing care in an appropriate setting• Coordinating and supporting care• Automated surveillance systems• Fully supporting primary care within

any shared care arrangements• Managing transition between

paediatric, young adult and adultservices.

Clinical consensus and expertise ofchildhood cancer and the late effectsof therapy indicate:• Although childhood cancer is rare, each

year approximately 1,400 new cases arediagnosed

• Currently one in 640 young adults is asurvivor of childhood cancer and it isestimated that there are approximately30,000 long-term survivors in the UK

• After childhood cancer 60% ofsurvivors who are five years or morefrom the completion of treatment willexperience at least one or more lateeffect of therapy. One third of thesewill be moderate or severe

• Effects of cancer treatment may bedelayed in onset and progressive andmay worsen with the effects of ageingand possibly environmental factors. Theneed for long-term surveillance isclearly identified

• Survivors of childhood cancer are atincreased risk of premature death. Thisremains three-fold higher than that ofthe general population, even at 45years from diagnosis. The excessmortality is mainly from second primarytumours, cardiac and pulmonary causes

• Radiotherapy and several types ofchemotherapy (e.g. alkylators,epipodophyllotoxins) increase the riskof death from second primary cancers,whilst cardiac irradiation and high doseanthracyclines are associated with latecardiac death

• Infertility in adult survivors of childhoodcancer remains one of the mostcommon and life-altering complicationsexperienced by adults treated forcancer during childhood. Surgery,radiotherapy and certain types ofchemotherapy may all impactnegatively on the reproductivepathway, and even in those whoremain fertile there may be anincreased incidence of spontaneousabortion, preterm labour and lowbirthweight due to the effect ofradiotherapy on uterine function.

The children and young people pathway - commissioning a solution

By implementing such a pathway,commissioners can ensurepatients are:• Empowered• Given choice as to the nature of their

follow up• Provided with care closer to home• Allowed easy access to support and

advice• Provided with co-ordinated, seamless

and efficient care.

For therapy based long term follow upguidelines please refer to:www.cclg.org.uk/researchandtreatment/content.php?3id=29&2id=19


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ASSIGNED

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ANDUPDATED

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ENTSUMMARY

ANDCARE

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Endocrinedysfunction

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thand

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syndrome/osteoporosis

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dysfunction

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and

increasedcardiovascularrisk

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ent

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damage

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psychologicalimpairm

ent

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•GVHDofskin/gut/l/oral/liver

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andbenign

tumours

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KEY

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ecialist;

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18

All children and youngpeople who are cancersurvivors should expectto receive the same,high quality standardof individualised careirrespective of where andwhen they are treated.

Alex Brownsdon,Patient Representative NCSI CYP Steering Group(March 2011)

“

”


Teenage and young adult aftercare pathwayLevel 1 and 2 supported self management and planned coordinated care pat

Care coordinator function and automat




level of care

IT systempopulated

AftercareMDT

Relapse -oncology/SMN



Transition

IT Systems


Level 2 planned coordinated care

Frequency of follow-up is determined

***There is flexibility to transfer throu

Both level 1 and 2 supported self man

Treatment summary and care plan is a


MDT

Treatment

Treatmentsummary

IT systempopulated

TREATMENT PATHWAY


thways

ted surveillance system by HUB PTC


GP (>18)

Shared carelocal hospital

Selfmanagement

***Transferto level1, 2 or 3pathway






Patient and parent educationand psychological support

Tests and reviewoutpatients department

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by level of risk **There is a flexibility with age range of transition (transition relates to purposeful and plannedmovement of CYP survivors from child and young adult to adult services)

ugh levels of care on the pathways

agement and planned coordinated care

living document to be updated at any event across the pathway The title of the pathway relates to theage of diagnosis

CNS +/-telephonefollow up

Consultant(level 2 only)

Survivorship programmes

Exercise programmes

Level 2 planned coordinated care

MDTreview



22

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agean

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view

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ired

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isciplinaryteam

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23

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agean

dyo

ungad

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thway

scen

ario

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l2

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Disease

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(neckand

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involvem

ent)

Femaleage

14years

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cris

tine

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line

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LEVEL2

DIAGNOSIS

TREATM

ENT

ENTRYINTO

LONG-TERM

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MDT)

RISKASSESSM

ENT


TRANSITION16-18&

24-25Y

(AFTER

MDT)

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RISKASSESSM

ENT


•Regularfollowupandreviewof

careplan

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•TestsandreviewinOPD

Tests:

•Heightandweight

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•LH,FSH,oestrogen

•ThyroidU/S(ifindicated)

•CarotidDopplerU/S(ifindicated)

•ECG(ifindicated)

•MRIifSMNsuspected

Survivorshipprogramme

Exerciseprogramme

Specialistreferral:

•Cardiologist

•Endocrinologist

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Rapidre-entrytostartofpathway

CLINICALLEVELOF

CARE

atPTCby:

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OR

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follow-up

OR

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OR

GP(when>18years)

Mildlateeffectsonly

expectedaslowdosesof

chemotherapy-

radiotherapy

LEVEL2

Adultservices

Automatedsurveillance

GPCNS+/-telephone

follow-up

Specialistbreastscreening


ITpopulationofupdated

careplan

ITpopulationof

treatmentsummary

locallyandweb-based



locallyandweb-based


includingriskassessment

TREATMENT

SUMMARY

CAREPLANINITIATED

CAREPLANNING

INCLUDING

ASSIGNEDLEVEL

OFCARE

CAREPLANREVIEWEDANDUPDATED

CAREPLANUPDATED

TREATMENTSUMMARY

ANDCAREPLAN

UPDATED

Potentiallateeffectsbutlow

dosesmaketheselesslikely:

•Cardiotoxicity

•Softtissuehypoplasia(neck)

•Carotidandcoronaryartery

stenosis/vascultis

•Lungfibrosis

•Hypothyroidism

•Earlymenopause

•SMN

KEY

:CNS-Clin

ical

nursesp

ecialist;

SMN

-Se

cond

maligna

ntne

oplasm

(tum

our);

ECHO

-Ec

hoca

rdiogram

;OPD

-Outpa

tient

Dep

artm

ent;

MDT-M

ultid

isciplinaryteam

(mee

ting);

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-Prim

arytrea

tmen

tce

ntre.

Care coordinator function and automa




level of care

IT systempopulated

AftercareMDT


MDT

Treatment

Treatmentsummary

Relapse -oncology/SMN



Transition

IT Systems


Frequency of follow-up is determ

***There is flexibility to transfer t

Treatment summary and care plan

IT systempopulated

TREATMENT PATHWAY

Teenage and young adult aftercare pathwayLevel 3 complex care


ted surveillance system by HUB PTC


MDTreview



***Transferto level1 or 2pathway






Patient and parent educationand psychological support

Tests and reviewoutpatients department

Referral to specialistclinic as required

ined by level of risk

through levels of care on the pathways

n is a living document to be updated at any event across the pathway

Consultantwith

automatedsurveillanceas required

Survivorship programmes

Exercise programmes

**There is a flexibility with age range of transition (transition relates to purposeful and plannedmovement of CYP survivors from child and young adult to adult services)

The title of the pathway relates to theage of diagnosis


26

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ure

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ENT

ENTRYINTO

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AFTERCARE(AFTER

MDT)

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ENT


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24-25Y

(AFTER

MDT)

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RISKASSESSM

ENT


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gularfollow

upan

dreview

ofcare

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ucationpa

tient

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rent

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ort

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ean

alysis

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eter

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andcreatin

inean

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ally/biann

nually

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selinean

das

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baseline&as

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ramme

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atPT

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ordprotectio

n)includ

ingriskassessmen

t

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MMARY

CARE

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DING

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VIEWED

ANDUPD

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ATE

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MMARY

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ATE

D


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nal

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ction

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ducedGFR

(rare)

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ction

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sexual

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rgicalcomplications

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ctalblee

ding

•cardiotoxicity

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N

Specialistreferral:

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hrolog

ist

•Psycho

sexualcoun

sellor

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prod

uctivespecialist

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nterolog

ist

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ist

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istifrelapse/SM

NRa

pidre-entry

tostartof

pathway

KEY

:CNS-Clin

ical

nursesp

ecialist;

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-Se

cond

maligna

ntne

oplasm

(tum

our);

ECHO

-Ec

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rdiogram

;OPD

-Outpa

tient

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artm

ent;

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ultid

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(mee

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arytrea

tmen

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ntre.


This is ongoing work, has yet to befinalised, and takes into account the needfor flexibility and interpretation at a locallevel.

With the rapidly enlarging cohort ofsurvivors it is becoming vital to look fordifferent models of care to provideappropriate care. Risk stratification usinglevels 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 chronicdisease 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.

Within the CCLG, the late effects grouppublished levels of care as a means ofdeveloping strategies for long termfollow-up in this expanding population ofsurvivors. The levels were supported upby an earlier publication updated in 2005on Therapy based long term follow up:Practice Statement. Updated in 2005 bySkinner R, Wallace WHB, Levitt GA, eds.Therapy based long term follow up:Practice Statement. United KingdomChildren’s Cancer Study Group, 2005.(available online atwww.ukccsg.org.uk/public/followup/PracticeStatement/index.html).

Section three

Children and Young People National CancerSurvivorship Initiative - Levels of Care

L1

L2

L3

LEVEL 1Characteristics may include:No routine outpatient attendancesInformation on prescription and/or an educational interventionAutomated surveillance tests with results by telephone or postAbility to reaccess system with/without reference to GP

LEVEL 2Characteristics may include:Planned review of care e.g. hospital, community, face to face or telephoneClinical examination if requiredPatients with co-morbiditiesThose who are unable/decline to self manage

LEVEL 3Characteristics may include:Complex rapidly changing healthComplex treatment complications or symptomatic needsComplex ongoing treatment regimesOther input required e.g. cardiology, haematology, gastroenterologyRequiring regular MDT reviews

The original Wallace levels of care were astatic measure. Experience has shownthat at different time points movementbetween levels may be required andoccur in both directions. Good patienteducation, ease of access back into thelong term follow up (LTFU) service wouldallow more patients to self manage andtherefore be stratified to a lower level; inaddition automatic recall for tests such asechocardiograph (ECHOs) investigation,urinalysis, Blood pressure (BP) monitoring,and second tumour surveillance wouldsupport the movement.

Work has been undertaken to try andaddress the static nature of the originalversion of the levels, to fit it into thechronic disease model and to take intoaccount the improved support forsurvivors (patient programmes, treatmentsummaries, care plans etc).

An expanded version of the Wallace levelshas now been developed through aconsultation process with the NCSIClinical Leads and the teams from ourprototype sites in February 2011.

Levels of careLevel 1:• No routine specialist follow-up• Primary care led support• Advice re: investigations/monitoring

from specialist centre (details in careplan)

• Investigations/monitoring at this levelwould be tests that primary care wouldroutinely do on their other patients,e.g. urinalysis, BP monitoring, ECHOs

• Only abnormal results should benotified to the care coordinator at thePTC

• Include Acute Lymphoblastic Leukaemia(A.L.L.) with no radiation, all otherswith low/moderate dose chemotherapyand no predicted significant late riskof morbidity.

Possible levels of follow-up more than five years fromcompletion of treatment

Level

1

2

3

Treatment

• Surgery alone• Low riskchemotherapy

• Chemotherapy• Low dose cranialirradation(<24Gy)

• Radiotherapy,except low dosecranial irradation

• Megatherapy

Method offollow-up

Postal ortelephone

Nurse (with lateeffectsexperience) orprimary care led

Medicallysupervised lateeffects clinic

Frequency

1-2 years

1-2 years

Annual

Examples ofTumours

• Wilms Stage I/II• Gem cell tumours(surgery only

• LCH (single systemdisease)

Majority of patients(e.g. All in firstremission)

• Brain tumours• Post BMT• Stage 4 patients(any tumour types)

ORGINAL WALLACE VERSION (Wallace, WHB, Developing strategies for long-termfollow-up of survivors of childhood cancer. BMJ 2001;323: 271-274)

Level 2:• As per Wallace table (above) but

include those previously exposed toradiation (other than TBI and brain 24+Gy/spinal tumour radiation who will belevel 3) e.g. CNS with expertise in lateeffects or informed GP

• Patients requiring psychological supportwould be in this level.

• Patients with cancer geneticpredisposition importantly this maybecome apparent at any time along thepathway. e.g. Li-Fraumeni, DICER 1should be referred to the appropriateexpert e.g. genetics

• Additional screening/information wouldthen be organised via this service

• Follow-up interval will be variabledependent upon need

• Optimum care = 1 or 2 yearly virtualreview of patients at specialist centreparticularly if new information becomesavailable

• Local surveillance similar proviso as forlevel 1

• Advice re investigations/monitoringfrom specialist centre (details in careplan)

• These patients may need recall forspecialist surveillance at intervals, e.g.Pituitary function assessments in cranialirradiated leukaemia patients

• Named key-worker at specialist centreprovided to support patient and theirprimary care.

Level 3:Doctor or nurse with late effects expertiseas per table, with exception of:• Those transferred to level 2 (see above),• Multiple relapses or multiple second

primary malignancies• Those with learning difficulties or other

reasons where there is clinical concernthat lower intensity of follow-up maynot provide safe and appropriate care

• Those already showing late effects e.g.cardiovascular.



Importantly patients treated on newdrugs/biological modifiers for example,will need careful supervised follow-up(should be part of research programme)

Suggested pathway variations may occurdepending on local demands.

Under 18 years of age• Level 1 or 2 will merge as patient

<18yrs will still require hospital basedcare albeit not necessarily PTC basedcare (shared care hospital / PTC CNS ordoctor with expertise in late effects)

• The follow-up interval may varydepending on the risk of developingproblems

• All these patients will be seen at thePTC at the appropriate time fortransition and the patient will again beallocated a level of care as discussedbetween the patient and LTFU service.

LEVEL 3This level remains PTC consultant lead.Some patients may be supported, inaddition, by their shared care hospital.Transition will occur as for level 1 and 2.

Over 18 years of ageAt this point patients should be seen inan adult environment. To enable this tooccur the patients must be transitionedand levels of care reassessed.

Transition points with review oflevels of care.1. At the appropriate time of leaving

children’s services approximately 18years (actual age dependant ondevelopment). This should be a faceto face appointment at the PTC.Doctor or CNS experienced intransition should conduct theappointments.

2. A further transition in the mid 20s(face to face, telephone etc) is highlyrecommended for all level 2 and 3patients. Optional for level 1.Thismaybe of value when young adultsare able to focus more on their futureneeds rather than immediate needsand longer term planning can occur.

A safe level of care framework is vital tothe success of the models of careproposed by the CYP workstream. Therisk assessment includes physical andpsychological assessments identifyingwhich level of care and which model offollow-up is appropriate for the individualpatient’s aftercare / late effects care.

Risk stratification exerciseProfessor M. M Hawkins, Chair inEpidemiology and Director of Centre forChildhood Cancer Survivor Studies,University of Birmingham, has beencommissioned by the CYP workstream tocomplete a risk stratification exerciseusing the data on the British ChildhoodCancer Survivors Study (BCCSS) database.

The expected outcomes from thiswork are:1. Preliminary/baseline findings by 20

March 20112. Final findings by mid September

2011.


The proposed models of care provide acore set of options for commissioners toconsider, to meet the appropriate needsof individual patients in terms of:• Clinical need and efficacy• Local geography / ease of access• Providing care that can be

adapted to meet patients needs.

Models of care – definitions andcomponentsEmerging from the testing work with ourtest sites, we have identified four modelsof care:1. Traditional PTC aftercare model.2. Shared care model of aftercare where

care is shared between the principaltreatment centre, shared care at localhospitals or GP/primary care services.

3. A nurse-led model of care (that mayinclude variations such as a telephone/text message model of aftercare).

4. A self-management model ofaftercare.

Section four

Proposed models of care - definitions and components

Self-management is the successfuloutcome of the person and allappropriate individuals and servicesworking together to support him or herto deal with the very real implications ofliving the rest of their lives with one ormore conditions.

The Long-term Conditions Alliance of Scotland (2008)

“

”


Model 2

Shared care model of aftercare where care is shared between the Principal Treatment Centre, shared care at localhospital or GP/primary care services

DefinitionThe CYP IOG states ‘Shared care centres are based at secondary care level and are for children affiliated to one or more of theUnited Kingdom Children’s Cancer Study Group (UKCCSG) centres…it will be appropriate and necessary for some elements ofcare to be provided by local hospitals, rather than the PTC, in a ‘shared care’ arrangement. The local hospital may or may notprovide specialist cancer services and the responsible team may be from paediatric or adult services, depending on age andthe nature of condition’ (www.cclg.org.uk/researchandtreatment/content.php?3id=29&2id=19).

Components of modelPlanned co-ordinated care for CYP cancer patients may be delivered in a shared care arrangement in consultation with thePTC. A specialist service at the PTC is responsible for advising on and co-ordinating the initial transfer of care. These modelsof shared care may differ from region to region: some patients could receive follow-up care from a consultant at their localhospital; or by the GP at the surgery; or there could be nurse-led follow up. The components of automated surveillance andremote monitoring recall would also apply with supported self management provided locally. Successful models of sharedcare are evident in other long term conditions disease groups (The Kings Fund 2010).

Advantages of shared care models of care include patients being able to be treated closer to home. CLIC Sargent (2010) hasidentified the benefits of delivering care closer to home including improved patient experience and cost savings. The one toone support for cancer patients report prepared for the DH (Frontier Economics 2010) identified not only cost savings to theNHS due to better coordinated shared care but also benefits to the patient, their families and society which include savings ontransportation costs and better education attainment.

Model 1

Traditional Principal Treatment Centre aftercare model

DefinitionTraditionally, follow-up cancer services for CYP have been delivered at the PTC, with services being delivered on a face-to-facebasis within an outpatient clinic setting. These services vary nationally, with some centres providing care for paediatrics,teenage and young adults, and follow-up care being delivered in a variety of settings, including adult services.

Components of modelThe practice and components of care are variable in relation to the aftercare provided by PTC. However, the followingcomponents feature in what can be termed the ‘Traditional Principal Treatment Centre aftercare model’• An outpatient follow-up appointment in a hospital setting involving a doctor and/or specialist nurse• An outpatient follow-up appointment in a hospital setting involving a joint

clinic approach with both paediatric and adult clinicians• An outpatient follow-up appointment involving a specialist clinician (e.g. endocrinologist).

These models of care for CYP cancer survivors, and the componentsof care that underpin each model, are outlined below.


Model 3

Nurse-led model of care (that may include variations such as a text messaging/telephonefollow-up model of care)

DefinitionNurse-led follow-up could be defined as follow-up care conducted by a CNS or nurse practitioner to provide clinical expertise,health-related education, psychological support and care coordination for patients requiring ongoing health care management.

Components of model• Holistic care, including clinical, psychological, and practical support• Patient education encouraging the principles of self-management• Assessment and coordination of care and care planning providing improved continuity of care• Multidisciplinary team discussion• Outpatient consultation• Telephone consultation – reducing cost on transport and financial resources to the patient.

Some key recommendations from the Royal College of Nursing (RCN) Rheumatology Nursing Forum (2010) suggest the CNSrole demonstrates significant cost benefits by freeing up clinicians appointments allowing them the time to provide care tonew or complex patients. Other cost benefits include a reduction in GP appointments through CNS’s conducting telephoneconsultation as opposed to traditional hospital follow up by clinician. Patient benefits including a focus on health promotionand making life style choices.

Model 4

Self management model of aftercare

DefinitionThe Long-term Conditions Alliance of Scotland (2008) defines self-management as “the successful outcome of the person andall appropriate individuals and services working together to support him or her to deal with the very real implications of livingthe rest of their lives with one or more conditions.”

Components of modelFor CYP cancer patients to be able to have a safe pathway of self-management, the healthcare providers need to haveprepared a detailed summary of treatment and work with the patient to develop an individualised care plan giving thepatient access to adequate information and services available for example Survivorship Programmes and exercise education.The benefits of care planning have been published in the NHS Improvement CYP workstream publication(www.improvement.nhs.uk/cancer).

The patient will take responsibility for the ongoing management of their care and will be supported by health careprofessionals within a shared care or primary care model of follow up. The health professional could be a CNS or GP followingup patients through a variety of methods including telephone or postal follow up. These patients may require automatedsurveillance or remote monitoring for follow up tests from the effects of cancer treatment or intervention, these effects maynot present until years later and need to be monitored for a further 20 – 30 years after initial treatment in some instances.Remote monitoring is an alternative process for gathering, reporting and disseminating patient information rather than themore traditional method of attending a clinic. Remote monitoring and/or automated surveillance can, and should, bedelivered in either primary, shared or tertiary care, and should not prevent discharge to primary care.


1. Patient choice and experienceThe individual choice of each patient isfundamental to the design and provisionof all aftercare services. The principle of‘no decision about me without me’ (DH2010) is central to our approach, and tothe defining of levels and models of care.

We have ensured comprehensive patientrepresentative involvement in our CYPwork. One example is shown below inthe extract from the Patient Experienceworkshop – The Way Forward: Is it Rightfor You? (February 2011)

ExtractThroughout test site activity the views ofyoung people have been actively sought.An evaluation team was charged withbringing the story together and ensuringthat the voice of young people hasinfluenced the direction of travel towardsrelevant and accessible models of follow-up care. As part of this evaluationexercise patient representatives from theNCSI CYP Steering Group, members fromtest site steering groups and participantsfrom Teenage Cancer Trust’s ‘The WayForward’ programme were invited toparticipate in a workshop held in Londonin February.

The overall aim of the day was to gainyoung people’s views on the describedpathways of care, to explore the conceptof self-management and views onexperiences of follow-up care: allexplored within the young people’s ownexperiences of ongoing care.

Three exercises drawing on participatoryresearch methods formed the basis of thework, ensuring all young people presenthad an opportunity to share the story inorder to:

• Reflect on the care they received,talking about their follow up care

• Look at the pathways, share witheveryone how they would work foryoung people

• Think about what are the key featureswithin follow up care, what would theyplace highest in a priority list;

• If they were supported by professionalsto lead on their own care, how wouldthat work for them, how canprofessionals help.

The day began with an overview of theNCSI, with Ryan Bishop and Faith Gibsontrying to make the DH policy speak moreaccessible and practical. Nigel Revellplaced the work of Teenage Cancer Trustwithin this context: revealing a sharedfocus on the importance of ongoing careto meet individual needs. Gill Levittdescribed the prototype teenage andyoung adult continuation of carepathways for the three levels of care.The young people then reviewed how thepathways would work for them, usingperson experience and stories to help usunderstand how the elements of thepathway would work in practice, such astransition, treatment summaries, andongoing care. Identifying how they felt itwould work ‘in the real world’.

The group then worked with previousdata generated by young people in orderto explore the key and important featureswithin follow up care (Gibson et al.2005). These elements were discussedand prioritised, describing which were themost important to them.

Section five

The components to support the models of care

Ryan Bishop, Patient Representative

Professor Faith GibsonCo Chair of the NCSI CYP Steering Group

James Ashton, Patient Representative

The final exercise in line with one of thekey shifts identified in the Children’s andYoung Peoples Survivorship initiative ‘ashift towards self management’ theyoung people were asked ‘if they weresupported by professionals to lead ontheir own care, how it would work forthem, other family members and whatwould they require to assist them.’ Theyalso identified positive and negativeelements of a self-management style offollow up.

Data from the workshop will betranscribed, analysed and reported fully inthe final publication. We can report herethat timely and accessible informationheld by the young person was seen to bevaluable. Transition at two time pointswas viewed positively, and increasingsupported self-management waswelcomed. Young people clearly hadmuch to say. Ongoing work within ‘TheWay Forward’ must ensure an iterativeprocess continues, where young peoplehave chance to say what they want, whatworks and what does not, andprofessionals listen in order to beconfident that services continue to deliverwhat care is required.

Workshop teamRyan Bishop: Patient RepresentativeNicola Bowden: Independent ConsultantAlex Brownsdon: Patient RepresentativeFaith Gibson: Co-Chair CYP Steering GroupGill Levitt: Co-Chair CYP Steering GroupMary Kunnenkeril: Teenage Cancer TrustJudi Tapp: NHS ImprovementNigel Revell: Teenage Cancer Trust

2. Treatment Summary and Care Plans(Work in progress as at March 2011)End of treatment summaries collating allthe cytotoxic treatment received, alongwith an explanation of the lateconsequences of the disease andtreatment and future follow-up plans areintrinsic to empowering patients andproviding information for healthcareprofessionals who may come into contactwith survivors. The patient-centredpathways are developed using thestarting point of the treatment summariesand care plans.

As part of the evidence to support thepatient pathways, the NCSIcommissioned the development andevaluation of these tools. Healthcareprofessionals including primary care,parents and survivors have been involvedin the evaluation from five PTCs. Earlyfindings have been reported as part oforal presentations, poster presentations,and previous publications. Thisevaluation exercise is in the process offinal analysis; the results will be availablefor the next publication in October 2011.

3. Care coordinator functionThe care coordinator functionencapsulates the whole patientsurvivorship pathway across all levels ofcare.

The principles underpinning coordinatedcare include:• Right care in the right place given by

the right person• Care can be delivered closer to home• Reduction in outpatient attendances• Increased communication and

education for both staff and patients• Effective / improved transition from

child and young adult services.


The care coordinator role could bedefined as a multifaceted approach toachieving continuity of care (Woodwardet al. 2004). Importantly the patientexperience of care should be connectedand cohesive, delivered in a logical andtimely fashion and be consistent withpatient’s medical and personal needs.

Care coordination is interchangeable withcontinuity of care, as the care providerneeds to know what has happened in thepast, what is happening now and futureplanning with providers agreeing onmanagement and ongoing care (VictorianGovernment Department of HumanServices 2007).

The care coordinator will beinterchangeable across the pathways.The function is not done in isolation butis performed as part of a team, usuallythe person who is leading on providingcare at that stage in the pathway (DH2008). This role may be the leadconsultant for a complex patient, CNS,GP or other Health care professionals(HCP) or an administrative member of theteam with appropriate knowledge andskills to triage /recall those on theplanned co-ordinated care or selfsupported management pathways.

Care coordinator functionpotential modelThe GOSH testing work has shown that awell-established care coordinator functioncan:• Provide an effective triage process for

all patients• Ensure queries from patients are dealt

with promptly• Reduce DNA rates• Create a team approach to the overall

care of all patients• Ease the workload for health

professionals by being an integral partof the team with the appropriateclinical support.


• Appropriate staff education and skills toeffectively transition patients shouldexist to ensure patients are transferredeffectively

• Multidisciplinary team (MDT) approachaccompanied by a treatment summaryand care plan – including healtheducation of risk of late effects, healthpromotion and self management (whenappropriate) or identified carecoordinator for planned coordinated orcomplex care

• Opportunity for young people to beseen in transition clinics without theirparents – promoting autonomy and selfmanagement

• Clear processes for care coordinationthough transition clinics e.g. sharedtransition clinics with paediatric andadult service

• Specialist commissioned individualizedpackage of care.

5. Remote monitoring systemsin placeTo enable patients to shift from traditionalhospital based models of aftercaresystems and processes need to be inplace to both monitor and alert patientsto the timing of screening tests /investigations required at specific timesand/or to deal with any issues patientsneed to have addressed by a healthprofessional.

NICE Guidance states that “there shouldbe robust and appropriate surveillance ofsurvivors, which will be intensive forthose with significant adverse late effectsof therapy and minimal for others whoare likely to remain well”.http://guidance.nice.org.uk

Taking into account the NICE Guidance aspart of our CYP prototyping work we aredefining ‘what remote monitoring means’in terms of CYP patients; and thenidentifying ways to meet these definedneeds.

However, remote monitoring and/orautomated surveillance can, and should,be delivered in either primary, shared ortertiary care, and should not preventdischarge to primary care.

Components of a remote monitoringrecall system could include:• Personalisation e.g. patient

customisation; the setting of individualparameters/tolerances for specific tests

• The ease of recording and monitoring aschedule of tests includingquestionnaires

• Support for the production of relevantcorrespondence, forms etc.

• The ability to identify any irregularresults e.g. failed take up of tests,abnormal results etc.

• Ability to link with other patientinformation systems for datadownloads/uploads

• Support for a diary system including theproduction of alerts that can becustomised, reminders etc.

• An ability to interrogate data e.g. thegeneration of regular lists of ‘due tests’by diagnostic speciality, ad-hoc dataqueries etc.

• The production of managementinformation relevant to the successfulrunning of the remote monitoringprocess/aftercare service.

The emphasis is to produce somepractical solutions with systems andprocesses that can be implementedwithout significant IT investment.

An IT solution to monitoring for lateeffects and triggering alerts forinvestigations is ongoing in Leeds.

We are taking into account the national‘Telehealth’ projects practical learning toinform our work and to help us to reachearly decisions on a way forward.

4. TransitionThe Department of Health Policy ResearchProgramme document (2010) suggests‘transition is most often defined as themovement from childhood intoadulthood and is a time of considerablepsychological and social change. It canalso be a difficult and challenging timefor young people and their families. Fordisabled young people or those with achronic illness, transition can be mademore difficult because it is oftenaccompanied by significant changes intheir care needs and in service provision,and they will transfer from children’s toadult services’.

Not only is transition relevant to themovement of children and young adult toadult services in health including physical,social and psychological growth anddevelopment but also includes youngadults taking more responsibility for theirown health, nutrition social care,education, entering further educationand employment and finances.

Elements of effective transitionshould include:• Transition process should commence

while still in a paediatric or Teenageand Young Adult (TYA) service, in aplanned and proactive way

• The patients age at transition willvary depending on physical andpsychological requirements, recognisingneeds will change over time

• Varying transition points at certain agese.g. 13-14, 16-18, 24-25 years of age

• Patient centred service – right care atthe right place at the right time

• Early engagement with adult services toensure there is capacity, adequatelytrained staff, and infrastructure

• Communication links with all servicesinvolved – with sharing of informationbetween the young person and allhealth professionals involved

The Cambridge team are planning todemonstrate their web-based recallsystem at the March 2011 workshop.This work is being led by Dr HelenHatcher.

6. Educating professionalsAppropriate training, development andeducation programmes are required tosupport the proposed models of care.Work is underway at a national level ledby the Department of Health (DH) as partof the NCSI, and the CYP workstream iscontributing to this body of work.

It is important to draw upon theexperience and work both nationally andinternationally. In Australia, one exampleof providing appropriate education forprimary care health providers comes fromthe Australian Better Health Initiative(2009) which included a scoping exerciseto identify existing courses (for all HCPs)within tertiary education including aconsultation exercise with medical,nursing and allied health professionalsand professional bodies; this has resultedin the development of a guide of corecapabilities needed to support self-management.

In the UK, the Sheffield team - led by DrDiana Greenfield - is currentlyundertaking work to develop nursecompetencies for long-term follow upcare.

The project currently being undertaken atSheffield Teaching Hospitals will addressissues related to nurse competencies inlong-term follow-up care (including lateeffects surveillance and issues ofsurvivorship), and identify specific trainingimplications for this group of care givers.This project focuses on the role of thenurse in the provision of late effects carefor young people diagnosed with cancerunder the age of 25 and will provide afoundation for a competency frameworkfor nurses providing care for CYP cancersurvivors.

The project has been designed in threephases, with phases one and two nowcomplete.

The phase three work (development ofnurse competencies) is ongoing and willinclude an extensive consultation processwith centres across the country. Withcompetencies to be ratified by the RoyalCollege of Nursing.


The team at Sheffield TeachingHospitals NHS Foundation Trust


4. A treatment summaryThis is a brief summary of thetreatment the patient has received in aclear format suitable for the patientand any health care professionals withwhom the survivor may have contactin the future.

5. A care planThis will include any future healthmonitoring required and advice aboutlong term healthcare issues and ahealthy lifestyle. This will also includeinformation about: local provision ofthe services offering the treatment forthe late effects of cancer treatmentsurvivor involvement groups and self-help groups; services offeringpsychological, social andspiritual/cultural advice.

As late effects services are developing it isclear the quality of services can beimproved further through:• Identifying transition points in the

survivor’s care pathway - with agreedtime points for revision of care plan andreview of on going issues

• The development of a web baseddatabase which would provideinformation to both survivors andhealth care professionals both inprimary and secondary care

• The use of audit in the assessment ofthe effectiveness of the service e.g.confirming strategic planning NOTcrisis management

• Providing education and the ability toupdate information as it becomesavailable to both survivors and HCPs.

Defining quality key indicators is theidentification of key indicators that needto be in place within the service toprovide effective care of patients withinall levels of aftercare.

Details of services have been definedwithin the national Cancer Peer ReviewProgramme (2008) but it is important toreflect on the essential components ofthese services and the philosophyunderpinning the care provided forsurvivors of cancer.

These key indicators include:1. A named lead clinician for the long

term aftercare service.

2. A core team of people withexpertise in the complications ofcancer who can be accessed throughthe patients key worker (carecoordinator) – A late effectsmultidisciplinary team (MDT).

This team meets regularly and includes:• An oncologist with some of their time

dedicated to the work of the lateeffects MDT

• A specialist nurse• An endocrinologist• An identified member of the team with

responsibility for providing informationfor patients and carers

• A psychologist.

3. A care coordinatorshould be available for all patients whohave survived cancer. The carecoordinator is a person who, with thesurvivor's consent and agreement,takes a key role in coordinating thesurvivor's care and promotingcontinuity, (e.g. ensuring the survivorknows who to access forinformation and advice). The needs ofthe survivor will dictate the type of carecoordinator (e.g. consultant/CNS/primary care and administrator), thismay change over time.

Section sixDefining quality through key indicators

Dr Gill Levitt, Consultant in Oncologyand Late Effects, Great Ormond StreetHospital for Children NHS Trust

Dr Meriel Jenney, Consultant PaediatricOncologist, Children’s Hospital for Wales

Dr Gill Levitt, Consultant in Oncology and Late Effects, Great Ormond Street Hospital for Children NHS TrustDr Meriel Jenney, Consultant Paediatric Oncologist, Children’s Hospital for Wales

IntroductionThe use of clear, quantifiable andqualitative measures are essential to beable to demonstrate any change or shiftin terms of where and how aftercare forpatients is provided. Unless there is anactual shift in how services are providedthere will be no real change or benefit toeither the patient or to the wider NHS inrelation to costs and use of resources.

Our prototype sites have workedcollectively to establish a range ofmeasures that will be used at local levelbut will also contribute to the evidencenationally in terms of the global measuresfor the CYP survivorship work.

National service improvementmeasures and objectives1. To achieve an overall 20% reduction

nationally in hospital based outpatientfollow-up appointments (e.g. thosepatients who are already routinelybeing followed up); to be tested outwith an initial four sites. To considerthe potential to identify percentagefollow-up reduction in terms ofclinically stratified levels of care and afocus on a reduction in unscheduledfollow-up care.

2. To work incrementally towardsachieving a 100% target over a fiveyear period (tolerance level to beagreed) of patients being providedwith a care plan and treatmentsummary (e.g. on a prospective basisfor those patients ending treatment,entering long-term follow-up andtransition).

3. To define the models of care and thekey components of proposed newmodels of care.

4. To capture and disseminate examplesand principles of ‘good practice’.

5. To provide robust evidence (includinghealth economics / cost-benefitanalysis data) to inform thecommissioning process.


Section seven

Using service improvement measures to achieve improvementEnsuring we make a difference for patients


National requirements Leeds Birmingham GOSH Bristol

Patient experience

To achieve 20%reduction inhospital basedaftercare

100% of patientsto have atreatmentsummary

100% of patientsto receive a careplan in 5 years

Define model ofcare (shared care)

Systems for rapidre-entry

Cost benefitanalysis

Care coordinationrole

Transitionservice

Qualitative measure todetermine satisfactory patientexperience

Quantify numbers of patientsper level

Quantify numbers of patientsmoving to primary/shared care

Quantify numbers of patientsreceiving or moving tonurse-led

Quantify the number ofpatients discharged with noactive follow-up

100% of patients to have atreatment summary

100% of patients to receive acare plan in 5 years

Details of the type and numberof tests required

Patient survey

Audit by risk stratificationmethodology

Identify the number of patientsshifting to primary care

Identify the numbers of GPagreeing to shared care

Number of patients witha treatment summary

Number of patients witha care plan

Number of patients involvedNumber of tests organisedType of test organisedLocation of test organisedNumber of tests organisedoutside LTHTType of tests organised outsideLTHT

York University HealthEconomics Consortia

Patient survey


Proportion of patients eligible fordischarge in medium risk group

Patient experience of dischargeand self management

Proportion of patients eligiblefor telephone follow-up

Patients acceptability oftelephone follow-up

Number of patients transferredto postal follow-up

Number of patients with atreatment summary each month

Clinician acceptability of the endof treatment summary


% of patients requiringcommunity based surveillanceand discharged toself-management includingrequired test

Number of patients on selfmanagement rapidly re-enteringthe system


May have links to nurse led andthe development of remotemonitoring methods

Identification of a robust adminprocess to prevent loss to follow-up

Patient survey


Record the number of patientstransferring to self managementservice

Identify the reduction in OPDattendance numbers

Number of patients with atreatment summary



Comparison data from twoclinics to determine functionalityof care coordination role

Identification of reduction inemergency admissions

Reduction in GP call numbers

Patient experience survey ofprevious follow-up


Clinic audit

Identify where patients havebeen seen previously

Clinic audit

Reduction in numberof DNAs

Number of patients witha treatment summary

GP experience


GP experience

Clinic audit


The table below shows the national service improvement measures for the NCSI CYP workstream and the local serviceimprovement measures across the four prototype sites as an indication of comparability.


Our four prototype sites have eachproduced evidence of their progress andthe key points from their work aredescribed in this section:

Birmingham Children’s HospitalNHS Foundation TrustThe focus of the Birmingham team led byDr Helen Jenkinson (Consultant PaediatricOncologist) comprises:

Treatment summary and care planTo ensure that every patient completingtreatment for childhood cancer has adocumented summary and plan of care,improve clinicians understanding of thenecessity for this and audit its usage.

Aftercare planning and model of care,self management and rapid re-entryTo gain a greater understanding of thepatients experience in gaining access tothe late effects service outside of theirregular appointment and to utilize thisknowledge to improve ease of access.To develop better web- based facilities toenhance the late effects service andexplore patient preferences for multi-media access and consultation.

Telephone follow upTo identify a number of patients thatwould be suitable for telephone follow-up service and whether they wouldaccess this type of intervention.

Self management and remotemonitoring1. To develop systems locally to allow

remote surveillance to be orchestratedthrough primary care in order toachieve the national target of 20%reduction in hospital follow-up.

2. To understand the patients experienceand views on discharge and to use thisto develop the self-management armof the late effects service.

3. To identify patients who may beeligible for discharge if remotesurveillance were possible and explorepatients’ attitudes towards this.

Section eight

Our evidence so far

The team at Birmingham Children’sHospital NHS Foundation Trust

Sarah Tranter, ServiceImprovement Facilitator

Helen Jenkinson, Clinical Test Site Leadand Consultant Paediatric Oncologist,Birmingham Children’s Hospital NHSFoundation Trust


Bristol Royal Hospital for Childrenand South West PaediatricOncology Shared Care NetworkThe focus of the Bristol team led by DrRachel Cox (Consultant PaediatricOncologist) comprises:

The key objective of the South WestYoung Cancer Survivors’ Project is toimprove Late Effects (aftercare) servicesfor young adult survivors of childhoodcancer resident in Devon and Cornwall bytesting the hypothesis that ‘EFFECTIVElong-term follow-up can be deliveredwith high levels of SATISFACTION in ashared care setting under the guidance ofthe principal treatment centre and thesupport of staff with specialistknowledge.”

The key aspect of this project is thetrialling of long-term follow-up in ashared care setting in the South Westsuch that patients receive a high level ofcare as close as is practical to their placeof residence. To this end, the next stageof the project will focus on piloting keyaspects of the shared care process in theDevon and Cornwall area:• It has been agreed by the project

steering group that Exeter is the mostappropriate location for the pilot

• It has also been agreed that it would bebeneficial to the success of the pilot ifcertain aspects of the new processesand procedures were tested at theaftercare clinics in Bristol before beingadopted in the Exeter pilot.

The scope of the phase two pilot inExeter will be confirmed following theresults of phase one pilot.

The capture of data has started atBristol aftercare clinics:• Clinic audit sheets have been used at

three clinics during February• A retrospective audit of clinics held

during December and January isplanned.

As per the quantitative data referred toabove, data capture has started inBristol in that the following have beenissued for aftercare clinics held in Bristolduring February:• Patient questionnaires• Patient letter questionnaires• GP questionnaires.

A care coordinator is being recruited aspart of the project.

A service user group exists in Exeter toinform the project proposals.

Questionnaires have been issued topatients attending clinics in Bristol andthis will be continued throughout theExeter pilot.

The team at Bristol RoyalHospital for Children


Great Ormond Street Hospital forChildren NHS TrustThe Great Ormond Street team led by DrGill Levitt (Consultant in Oncology andLate Effects) began with three areas offocus:

1. Developing and testing survivor careplans.

2. Developing and evaluating transition.3. Defining the role of the ‘key worker’

(now known as the care coordinator).

From November 2010, the focus hasshifted to include a strong emphasis onrisk stratification and ensuring thatpatients are on follow-up pathwayswhich correspond to their level of risk.

Risk stratification1. Over a four month study period

(October 2010 to February 2011), riskstratification levels were assigned,according to the Wallace criteria, to allpatients entering the LTFU service, andtheir method of follow updocumented. Following entry to LTFU,the main outcome for patients is eithertransfer to the paediatric oncologyshared care unit (POSCU) until age 16years (31%) or clinic follow-up withinLTFU clinics (Table I).

2. Over the same four month studyperiod risk stratification levels wereassigned at transition (age 18-20years). The normal outcome attransition is that low risk patients arenot always discharged to GP. Currently66% only level 1 patients aredischarged to GPs (Table II).

3. Risk stratification was assigned to allpatients who had made enquiries intoLTFU as part of the key worker audit,to evaluate the risk level of those usingthis service. Overwhelmingly theservice is used by level 3 patients(70%) who have the most pressingneeds but a significant proportion ofusers were level 2 (23%).

4. Additionally, in the previouslymentioned three evaluation groups,patients were re-stratified according tothe proposed new criteria to identifythe number of survivors who,potentially, could be followed up safelyin a different manner from currentpractice, after transition (Tables I,II& III). Approximately 10% of thepatients in Table III could be assigned alower level of risk and potentiallymoved to a different model of care.The reason why some low risk patientsare not transferred to the care of theGP is because the fail-safe systems arenot yet in place. The preferred optionis to transfer such patients into primarycare in the future, once treatmentsummaries, care plans and automatedsurveillance are fully operational andvalidated and pathways have beencommissioned.

Susan Mehta (left), Clinical NurseSpecialist Long Term Follow-up andDr Alison Leiper, Associate Specialist inPaediatric Oncology and Late Effects ofTreatment for Malignant Disease

Level 1 Level 2 Level 3 Total

Patient number at entry to LTFU (%)

Number referred to POSCU (%)

Patient number using new levels

8 (19%)

11

3 (38%)

19 (45%)

16

8 (42%)

15 (36%)

15

2 (13%)

42 (100%)

42

13 (31%)

Risk stratification data

Wallace Levels

Table I

Level 1 Level 2 Level 3 Total

Patient number at transition (%)

Number discharged to GP (%)

Patient number using new levels

3 (11%)

8

2 (66%)

15 (56%)

14

2 (13%)

9 (33%)

5

0 (0%)

27 (100%)

27

4 (15%)

Wallace Levels

Table II


Level 1 Level 2 Level 2/3 Undefined

8Enquiries into LTFUas part of keyworker audit

Percentage of total 3.8%

48

23%

6

2.9%

26

Treatment summary and careplanning• LTFU patients are now routinely

provided with a Treatment Summary(TS) and Care Plan (CP) at entry to LTFUand again at transition. Riskstratification is assigned at both ofthese stages

• Initiatives are in place so that thepreparation of a treatment summary iscompleted after the end of activetreatment and a care plan is started atentry to LTFU

• Since April 2010, 200 TS/CPs have beenissued at entry to LTFU and 80 more attransition.

Planned work – September 2010onwards (milestones with expectedoutcomes to be confirmed)

For >18 age group• Investigate the potential for

implementing ‘Read codes’ on GPsystems to support discharge of lowrisk patients at transition

• Develop a LTFU operational policy tosupport discharge to the GP withinservice and clinical (risk stratification)protocols

• Develop and deliver a communicationsand engagement plan to increase GPawareness of planned changes in LTFUservice

Level 3

147

70.3%

Total

209

100%

• Evaluate potential for GOSH to deliverthe first reminder to patients that havebeen discharged, to arrange their nextappointment – to provide a gradualtransition to fully supported selfmanagement with the GP

• To increase the proportion of low riskpatients that are discharged to the careof their GP

• Model the current cost of activity,looking at the potential gain inincreasing the number of patients thatcan be discharged to the GP (level 1).

For <18yrs age group• To increase the number of survivors

managed closer to home throughincreased use of shared care hospitals.• To evaluate the hospital needs to

support this service. For preliminaryresults see Pan Thames survey(September 2010 publication).

Table III


Yorkshire Cancer Network(St James Hospital, Leeds)The focus of the work, led by Dr AdamGlaser (Consultant Paediatric andAdolescent Oncologist) comprises:

The YCN initiative comprises two integratedcomponents, namely the development of aclear, sustainable, and safe shared carepathway, and also the development of acommunity cancer portal (CCP).

The aim is to move away from thetraditional tertiary management ofpatients to one that allows appropriatepatients to take control of their care andbe increasingly managed within their owncommunity with primary care support.

Detailed mapping of existing carepathways has been undertaken. Newpathways of risk-stratified care have beendeveloped in alignment, and inaccordance, with national activities of theNCSI. These pathways will lead to fewerattendances at the LTFU programme andincreased utilisation of telephone andremote surveillance. Personalised carepackages will be delivered to patients inagreed partnerships between primarycare and the LTFU programme. Locallydelivered investigations and examinationswill be offered to service users whereappropriate (as agreed by the patient,their GP and the LTFU programme).

A shadow pilot of the pathway isunderway (January-March 2011) toidentify which components of the carepathway (physical examinations andinvestigations) patients’ primary careproviders would be willing to takeresponsibility for delivering ifinterpretation of findings was performedby the LTFU programme. This willhopefully identify the potential size,nature and potential concerns regardingany future shift from tertiary to sharedcare with primary care. The exercise willinvolve approximately 260 patients.

The CCP is a web-based IT system,currently under development. It will betested further and with other interestedsites, e.g. Birmingham, GOSH, andNewcastle. Further information can befound on the following link:www.improvement.nhs.uk/documents/CYP_Building_the_Evidence.pdf

Health economicsThe CYP workstream has commissionedYork University to undertake a HealthEconomics exercise to contribute to theoverall evidence by October 2011. Abrief description of their proposed focusand approach is shown below.

Health Economics Exercise (by the YorkUniversity Health Economics Consortium)has identified:• The incidence and prevalence of cancer

in children and young people• Follow-up services provided for children

and young people initially at our fourprototype sites

• Costs and outcomes from publishedevaluations including the costs to parents

• Follow-up services provided by primarycare, social services and the voluntarysector.

The York Consortium HE exercise will alsogather data on incidence and prevalence ofcancer. Currently, only a limited number ofstudies examine the costs and outcomes ofcancer survivorship in children and youngpeople. Also, the literature indicates thatfollow-up regimes are variable in duration,resource requirements and outcomes,depending on the type of cancer and typeof treatment that the person hasexperienced. The search will continue togather relevant evidence and informationthroughout the exercise.

A proposed template to gather data andevidence will be presented for commentand discussion at the March 2011workshop and a baseline exercise will becompleted by September 2011.

Summary in terms of overall evidenceThis work is ongoing and evidence fromour prototype sites by October 2011 willform the basis of the overall evidence toinform the decision making forcommissioners in the future.

Findings from our initial test sites will alsobe drawn into the overall body ofevidence in October 2011.

Dr Adam Glaser, Consultant Paediatricand Adolescent Oncologist

Geraint Hughes, Service ImprovementFacilitator


Section nine

Key recommendations emerging from this work to date (March 2011)

All aftercare services need to be cost-effective and delivered by the appropriatehealth care professional to ensure bestuse of skill mix and resources based onthe principles listed below and theevidence contained within this document.

1. Patient choice and being responsive toindividual clinical, psychological andpractical needs is paramount and thebasis for all aftercare.

2. All aftercare services should be basedon consistent patient pathways asdefined in this document (to befurther refined by the end ofSeptember 2011) and all servicescommissioned on this basis.

3. All aftercare is based on safe(stratified) Levels of Care as defined inthis document (to be further refinedby the end of September 2011).

4. A detailed treatment summary shouldbe completed at the end of treatmentfor all patients.

5. A care plan (manually or electronically)should be completed for all patientsat appropriate stages of their patientpathway (end of treatment and at thestages of transition for example).

6. It is not sustainable to continue toprovide aftercare with traditionalhospital based consultant-led follow-up appointments in the future in viewof the growing numbers; models ofcare need to be implemented thatactually shifts patients into alternativemodels of care (for example –discharged, self-management, sharedcare or a nurse-led model of care).

7. To achieve a minimum 20%reduction nationally in hospital basedoutpatient follow-up appointments(those patients already routinelyfollowed up).

8. All patients to be provided withcomprehensive information to enablethose who are suitable to do so self-manage.

9. All patients should receive aftercareservices based on a core set ofquality key indicators to be refined.

10. An effective care coordinatorfunction should be in place tostreamline the care for all patients.The way in which the carecoordinator function is provided is forlocal implementation. The carecoordinator would need to work aspart of the local team with agreedprotocols and access to clinical advicefrom the appropriate healthprofessionals.

11. Effective remote monitoring and alertsystems need to be in operation toremind patients when specificscreening/investigations are required.

12. A pre-planned and co-ordinatedapproach is essential at all stages oftransition.

13. Services need to be provided andaligned with key national initiativesand standards for example ImprovingOutcomes Guidancehttp://guidance.nice.org.uk/CSGCYPand Children’s Cancer and LeukaemiaGroup www.cclg.org.uk


References

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Department of Health (2008). Improvingcare for people with long termconditions. Care coordination an ‘at aglance’ guide for healthcare professionals(information sheet 3) www.dh.gov.uk

Department of Health Policy ResearchProgramme, Reference Number 0600005. Models of Multi-agency Servicesfor Transition to Adult. Services forDisabled Young People and Those withComplex Health Needs: Impact and costs.September 2010. www.dh.gov.uk

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RCN (2010) Clinical nurse specialist:adding value to care. www.rcn.org.uk

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Website links

www.improvement.nhs.uk/cancer

http://guidance.nice.org.uk/CSGCYP

www.transitionpathways.co.uk/links

NHS Improvement3rd Floor | St John’s House | East Street | Leicester | LE1 6NB

Telephone: 0116 222 5184 | Fax: 0116 222 5101

www.improvement.nhs.uk

NHS ImprovementNHS Improvement has over 10 years improvement experience. With our practicalknowledge and ‘how to’ approach we help improve the quality and productivity ofservices through using innovative approaches as well as tried and testedimprovement methodology.

Over the last 12 months we have tested, implemented, sustained and spreadimprovements with over 250 sites to assist in improving services in cancer,diagnostics, heart, lung and stroke. Working closely with the Department of Health,trusts, clinical networks, other health organisations and charities wehave helped deliver key strategies and policies to improve the delivery andimplementation of improved services for clinical teams and their patientsacross the NHS.

Delivering tomorrow’simprovement agendafor the NHS

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NHSNHS Improvement

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models of care to achieve better outcomes for children and young people living with and beyond...

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