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

NHS
CANCER DIAGNOSTICS HEART LUNG STROKE
NHS Improvement
Cancer

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

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

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

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

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

Setting the scene professionals and commissioners believe are the
All children and young people (CYP) who are cancer needs. Whatever models are developed, they must
survivors should expect to receive the same, high make sense to young people, that it is clear within
quality standard of individualised care irrespective of the model of care what support is available for them
where and when they are treated, their type of to continue to get on with their lives.
cancer or stage of disease. Consistency in the care
pathways delivered to them is therefore of paramount What it might mean to young people
importance in order to achieve this expected aim. I feel that all CYP cancer survivors should receive
individualised care that is tailored to meet their own
Clinical risk stratification is also extremely important personal needs. It is essential that all CYP cancer
in providing individualised care tailored to the clinical, survivors are kept informed about their illness with a
psychosocial and practical needs of each CYP cancer level of information appropriate to them that is
survivor. We recognise as the number of CYP cancer updated when necessary. This can empower CYP
survivors increase, it will not be possible or cancer survivors to play an active role in their own
economically viable to follow-up every cancer care by facilitating educated discussion with health
survivor in the way that has become accepted. While care professionals about their treatment and ongoing Alexandra Brownsdon
many CYP cancer survivors will need to attend care. Being appropriately well informed could also Patient Representative NCSI
hospital appointments, others may benefit from assist with responsible self-management, and CYP Steering Group
more remote follow-up methods including telephone promote the opportunity for choice and control in a
and 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 in
which this happens can now be re-evaluated in line Treatment summaries will be a useful tool for CYP
with modern technology, offering many young cancer survivors and will avoid them continually
people a more practical and maybe more acceptable having to repeat their medical history to new health
approach to their ongoing care. professionals. Having this information should also
increase knowledge of what has happened, with an
Such high quality care throughout CYP cancers agreed care plan helping young people to
survivors’ lifetime is essential in achieving a successful understand the ongoing care they may need and
long-term outcome. Health professionals have a how they can take responsibility for how they look
responsibility 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 information
will have on the rest of the young person’s life is not used in a negative way against the survivors
including normal development, independent living and that confidentiality is maintained. Transition is
and academic and social achievements. Providing also an extremely important part of follow-up care
appropriate models of follow-up care and ensuring and should be consistent across all models. In
that cancer survivors have access to adequate addition, transition should also be consistent with
support and advice throughout their lives is clinical risk stratified care to ensure that this is
fundamental to maximising long-term patient well continued from childhood into adulthood. It is also
being. important that patient transition is carried out by
proactive, well-informed health professionals to
In order to be appropriately implemented and acted maintain a smooth transition of care. Long-term
upon, the models of care delivered to CYP cancer follow-up care of CYP cancer survivors would also be
survivors must be clearly set out to commissioners. greatly aided by having access to a care coordinator
They must also be realistic in terms of cost to ensure function to provide a reliable support resource for all
sustainability and to meet the needs of all patients in CYP cancer survivors throughout their lives and
the light of the current NHS financial pressures. It is cancer journey.
important too that the models of care are able to
meet the individual needs of the CYP cancer survivors
themselves and not just what the healthcare


Patient representation has formed an integral and Response from the Co Chairs of the
valuable part of the National Cancer Survivorship NCSI CYP Steering Group
Initiative (NCSI) CYP Steering Group’s work and CYP “Thank you to Alex for setting the scene and placing
cancer survivors have contributed to shaping the this latest publication in context of both what is
direction of this work by providing constructive and important for young cancer survivors as well as
practical input based on their own, first hand where test site activity has moved to. We are much
experiences. 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 the
voice in how the new models of care are developed young people and other family members who
as this has enabled survivor’s views to inform the care continue to contribute to the test site steering
that 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 Brownsdon
Patient 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


Acknowledgements

We continue to be sincerely grateful to all of our
test and prototype sites for their tremendous
commitment and hard work during the course
of the National Cancer Survivorship Initiative.

It has been a pleasure to work with them as we
work towards producing practical and tangible
evidence to achieve the highest standards of
care possible for those children and young
people living with and beyond cancer.

Without the clinical leadership, practical
service improvement, and project management
expertise from our sites, this work would simply
not be possible.

Thank you again for your contribution.

On behalf of the NCSI CYP Steering Group
March 2011

“ 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 ”


Section one
Executive summary

In brief, within this publication we have • Yorkshire Cancer Network/St James’ • The completion of three testing cycles
included information to tell the story so University Hospital, Leeds of a very successful education
far 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, The
provide in time for our October 2011 • Sheffield Teaching Hospitals NHS Christie, Manchester
workshop. Information is provided to Foundation Trust. • The completion of an evaluation
illustrate the following: exercise of transition services led by Dr
Examples of this work include: Gill Levitt, Consultant Paediatric
1. The patient perspective. • Production of an exercise DVD by the Oncologist and Susan Mehta, Clinical
2. 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 Street
3. 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 rapid
We held our most recent National re-entry
Children and Young People Workshop in • Aftercare planning and
September 2010 when we published an model of care. Telephone
overview of the outcomes from our initial follow-up
group of 10 sites based on the testing
work they had completed at that stage. Bristol Royal Dr Rachel Cox • Model of care
You can access this information at: Hospital for Test Site Lead • Shared care
Children & and Paul Beynon • Patient experience
www.improvement.nhs.uk/documents/ South West Project Manager • Treatment summary and
CYP_Building_the_Evidence.pdf Paediatric Liz Alsbury care plan
Oncology Shared Service Development Manager
These 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


Since September 2010, we have been 4. To define the models of care, and the Key recommendations emerging from
redefining 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 cost
and we have established work with four indicators of quality to support the effective and delivered by the appropriate
sites 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 on
The four sites we are working with as children and young people living with the principles listed below and the
our 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 safe
September 2011 Definitions of proposed models (stratified) levels of care as defined in
The six specific outcomes from these four of care this document (to be further refined by
sites 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 should
CYP centres in England to achieve the be completed at the end of treatment
following: 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 of
3. 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.


7. 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 site
11. 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 the
13. 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.

“ 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


Section two
The development of consistent patient pathways -
commissioning a solution
Introduction Summary
As a starting premise, the long-term These pathways have been widely
provision of follow-up for all cancer consulted upon, and represent the views
survivors in a hospital setting is not viable of a wide cross-section of health
or appropriate in the future given the professionals, patients and commissioners
exponential increase in the numbers of as a basis to commission services in a
cancer survivors. consistent way in the future – with a
recognition that services need to be both
Therefore, the CYP workstream, working clinically justified, affordable, and meet
with clinicians, commissioners, patients the needs of each patient during their
and local teams have developed a lifetime of care.
national pathway that identifies how
follow-up for children and young people
can be delivered to take into account
current NHS wide financial pressures in
the public sector and also continue to
meet the needs of our patients during the
coming years.

The three pathways that we have
developed are shown on the following
pages, with practical scenarios to expand
on the importance of aspects of the
pathway, and why the service depicted in
these pathways should be commissioned.

Pathways will need to be interpreted
locally dependent upon local
circumstances and resources.


The children and young people pathway - commissioning a solution

Treatment 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 ensure
depend 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 • Empowered
cumulative dose and class of year approximately 1,400 new cases are • Given choice as to the nature of their
chemotherapy, site and dose of diagnosed follow up
radiotherapy, age at start of treatment • Currently one in 640 young adults is a • Provided with care closer to home
and gender of the patient as well as survivor of childhood cancer and it is • Allowed easy access to support and
genetic and other factors. estimated that there are approximately advice
30,000 long-term survivors in the UK • Provided with co-ordinated, seamless
Stakeholders within the Children and • After childhood cancer 60% of and efficient care.
Young People National Cancer survivors who are five years or more
Survivorship Initiative - have developed a from the completion of treatment will For therapy based long term follow up
national 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=19
pressures and aspirations. The pathway • Effects of cancer treatment may be
builds upon the learning from varied delayed in onset and progressive and
national testing work and will help inform may worsen with the effects of ageing
commissioners of the requirements of and possibly environmental factors. The
children and young people living with need for long-term surveillance is
and surviving cancer. clearly identified
• Survivors of childhood cancer are at
Pressure for change increased risk of premature death. This
The long-term provision of follow-up for remains three-fold higher than that of
all survivors in hospital settings is simply the general population, even at 45
unfeasible given the exponential increase years from diagnosis. The excess
in survivors. mortality is mainly from second primary
tumours, cardiac and pulmonary causes
The principles emerging from the • Radiotherapy and several types of
testing 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.


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


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 diagnosis

mary 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

Paediatric 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 CARE

KEY: 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

Paediatric aftercare pathway scenario level 2



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

OF CARE

KEY: 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

Paediatric aftercare pathway scenario level 3



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
Rapid re-entry to start of pathway or
palliative care

OF CARE

KEY: 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.

“ 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)
”


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
MDT planning

Treatment Care plan
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


thways

ted surveillance system by HUB PTC

palliative
care pathway


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 programmes

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)

ugh levels of care on the pathways Level 2 planned coordinated care
agement 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

Teenage and young adult aftercare pathway scenario level 1



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

OF CARE

KEY: CNS - Clinical nurse specialist; SMN - Second malignant neoplasm (tumour); OPD - Outpatient Department; MDT - Multidisciplinary team (meeting); PTC - Primary treatment centre.




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

OF CARE

KEY: CNS - Clinical nurse specialist; SMN - Second malignant neoplasm (tumour); ECHO - Echocardiogram; OPD - Outpatient Department; MDT - Multidisciplinary team (meeting); PTC - Primary treatment centre.
23


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
MDT planning

Treatment Care plan
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


ted surveillance system by HUB PTC

palliative
care pathway


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 pathway

ined 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 pathways

n 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




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

OF CARE

KEY: CNS - Clinical nurse specialist; SMN - Second malignant neoplasm (tumour); ECHO - Echocardiogram; OPD - Outpatient Department; MDT - Multidisciplinary team (meeting); PTC - Primary treatment centre.


Section three
Children and Young People National Cancer
Survivorship Initiative - Levels of Care
This is ongoing work, has yet to be
finalised, and takes into account the need
for flexibility and interpretation at a local L1
level.

With the rapidly enlarging cohort of
survivors it is becoming vital to look for
different models of care to provide
appropriate care. Risk stratification using L2
levels of care is essential to inform patient
pathways and provide a basis for effective
follow-up models.

Survivors of cancer may develop chronic
conditions. The use of the chronic L3
disease model of different levels of care
fits well with our idea that levels of care
can be stratified by risk of developing
consequences or requiring on going
management. Risk stratification - is
based on disease, type of treatment,
gender, age and psychosocial needs of
the patient at the time of treatment and
at the time points along the journey a
level is assigned and at the specific time
points.
LEVEL 1
Within the CCLG, the late effects group Characteristics may include:
published levels of care as a means of No routine outpatient attendances
developing strategies for long term Information on prescription and/or an educational intervention
follow-up in this expanding population of Automated surveillance tests with results by telephone or post
survivors. The levels were supported up Ability to reaccess system with/without reference to GP
by an earlier publication updated in 2005
on Therapy based long term follow up: LEVEL 2
Practice 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 telephone
Therapy based long term follow up: Clinical examination if required
Practice Statement. United Kingdom Patients with co-morbidities
Children’s Cancer Study Group, 2005. Those who are unable/decline to self manage
(available online at
www.ukccsg.org.uk/public/followup/Pract LEVEL 3
iceStatement/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


The original Wallace levels of care were a
static measure. Experience has shown Possible levels of follow-up more than five years from
that at different time points movement completion of treatment
between levels may be required and
occur in both directions. Good patient Level Treatment Method of Frequency Examples of
education, ease of access back into the follow-up Tumours
long term follow up (LTFU) service would
1 • Surgery alone Postal or 1-2 years • Wilms Stage I/II
allow more patients to self manage and • Low risk telephone • Gem cell tumours
therefore be stratified to a lower level; in chemotherapy (surgery only
addition automatic recall for tests such as • LCH (single system
echocardiograph (ECHOs) investigation, disease)
urinalysis, Blood pressure (BP) monitoring,
and second tumour surveillance would 2 • Chemotherapy Nurse (with late 1-2 years Majority of patients
support 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 led
address the static nature of the original
version of the levels, to fit it into the 3 • Radiotherapy, Medically Annual • Brain tumours
chronic disease model and to take into except low dose supervised late • Post BMT
account the improved support for cranial irradation effects clinic • Stage 4 patients
survivors (patient programmes, treatment • Megatherapy (any tumour types)
summaries, care plans etc).
ORGINAL WALLACE VERSION (Wallace, WHB, Developing strategies for long-term
An expanded version of the Wallace levels follow-up of survivors of childhood cancer. BMJ 2001;323: 271-274)
has now been developed through a
consultation process with the NCSI Level 2: • Advice re investigations/monitoring
Clinical Leads and the teams from our • As per Wallace table (above) but from specialist centre (details in care
prototype sites in February 2011. include those previously exposed to plan)
radiation (other than TBI and brain 24+ • These patients may need recall for
Levels 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


Importantly patients treated on new 2. A further transition in the mid 20s
drugs/biological modifiers for example, (face to face, telephone etc) is highly
will need careful supervised follow-up recommended for all level 2 and 3
(should be part of research programme) patients. Optional for level 1.This
maybe of value when young adults
Suggested pathway variations may occur are able to focus more on their future
depending on local demands. needs rather than immediate needs
and longer term planning can occur.
Under 18 years of age
• Level 1 or 2 will merge as patient A safe level of care framework is vital to
<18yrs will still require hospital based the success of the models of care
care albeit not necessarily PTC based proposed by the CYP workstream. The
care (shared care hospital / PTC CNS or risk assessment includes physical and
doctor with expertise in late effects) psychological assessments identifying
• The follow-up interval may vary which level of care and which model of
depending on the risk of developing follow-up is appropriate for the individual
problems patient’s aftercare / late effects care.
• All these patients will be seen at the
PTC at the appropriate time for Risk stratification exercise
transition and the patient will again be Professor M. M Hawkins, Chair in
allocated a level of care as discussed Epidemiology and Director of Centre for
between the patient and LTFU service. Childhood Cancer Survivor Studies,
University of Birmingham, has been
LEVEL 3 commissioned by the CYP workstream to
This level remains PTC consultant lead. complete a risk stratification exercise
Some patients may be supported, in using the data on the British Childhood
addition, by their shared care hospital. Cancer Survivors Study (BCCSS) database.
Transition will occur as for level 1 and 2.
The expected outcomes from this
Over 18 years of age work are:
At this point patients should be seen in 1. Preliminary/baseline findings by 20
an adult environment. To enable this to March 2011
occur the patients must be transitioned 2. Final findings by mid September
and levels of care reassessed. 2011.

Transition points with review of
levels of care.
1. At the appropriate time of leaving
children’s services approximately 18
years (actual age dependant on
development). This should be a face
to face appointment at the PTC.
Doctor or CNS experienced in
transition should conduct the
appointments.

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

Recommandé

Recommandé

Contenu connexe

Tendances

Tendances (7)

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

Similaire à Models of care to achieve better outcomes for children and young people living with and beyond cancer (20)

Plus de NHS Improvement

Plus de NHS Improvement (20)

Dernier

Dernier (20)

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