Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence

NHS
CANCER NHS Improvement
Cancer

DIAGNOSTICS

Children and young people living with and beyond cancer
HEART
Designing and implementing pathways
to benefit patient aftercare:
LUNG
Continuing to build the evidence

STROKE

This publication is the fifth in a series of National Cancer Survivorship
Initiative (NCSI) Children and Young People publications (October 2011)

Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 3

Contents

Background to the Children and Young People Workstream 4

Section 1
Introduction and purpose of this publication 7

Section 2
A summary of the overall evidence 10

Part 1
• Children and young people aftercare pathways 12

Part 2
• Models of care 18

Part 3
• Entry into long term follow up 19
• Clinical levels of care 20
• Evidence-based risk stratification of survivors 21
• Transition 22

Part 4
• A summary of evidence from the children and young people 25
testing and prototyping (October 2011)
• Health economic evaluation to support models of care 35
• Patient experience 38
• Nurse competence 40

Section 2
The ten key principles and recommendations 42

Section 4
Steps to spread and implementation 44

Section 5
National Cancer Survivorship Initiative Children and Young 47
People Workstream - Expectations 2012-2015

Section 6
Establishing and embedding the foundations: The key messages 49

Section 7
Contacts 51

Section 8
References 54

www.improvement.nhs.uk/cancer

4 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence

Background to the children
and young people workstream

The National Cancer Survivorship Initiative (NCSI) evolved The CYP workstream is made up of key stakeholders
from the Cancer Reform Strategy (2007). The NCSI was nationally these include representatives from:
launched in September 2008 and is a partnership
between the Department of Health, Macmillan Cancer • Young People Cancer Survivors
Support and NHS Improvement. • Lead Cancer Clinicians
• Cancer Networks
The Children and Young People (CYP) workstream is one • Cancer Charities including MacMillan UK,
of seven workstreams conducting improvement work as CLIC Sargent and Teenage Cancer Trust
part of the NCSI. The aim of this national initiative is to • Primary Care
improve models of aftercare provided for those patients • Department of Health
surviving cancer, many of whom will need a range of
clinical and non-clinical services to enable each of them The CYP workstream has over the past 30 months tested
to live a happy, healthy normal life after their initial and prototyped models of care within both clinical and
treatment for cancer. The NCSI national steering group non-clinical services.
provides the links to other workstreams across the
initiative. There are ten national test sites involved in the CYP
workstream. These test sites were the result of
There are over 40,000 survivors of childhood cancer in successful expressions of interest (in February 2009) from
the UK with 60% of childhood cancer survivors nine cancer treatment centres and one cancer charity.
experiencing at least one adverse late effect of cancer
treatment. It has also been reported that 50% of • The Leeds Teaching Hospitals NHS Trust
survivors of childhood cancer patients are ‘lost to follow • The Christie NHS Foundation Trust
up’. The follow up for aftercare services for CYP cancer • Birmingham Children's Hospital NHS
survivors varies nationally but is predominately clinician Foundation Trust
led at a Principal Treatment Centre (PTC). With the • Sheffield Teaching Hospitals NHS Foundation Trust
exponential increase in the number of young adult • University Hospitals Bristol NHS Foundation Trust
cancer survivors - strategies and a change in the • The Royal Marsden NHS Foundation Trust (RMH)
philosophy of a single model of care to a more holistic • Great Ormond Street Hospital for Children
model is needed. NHS Trust (GOSH)
• Cambridge University Hospitals NHS
One of the key drivers for CYP follow up comes from The Foundation Trust
National Institute of Clinical Excellence (NICE) CYP • Royal Alexandra Children's
Improving Outcomes Guidance (IOG). These guidelines Hospital (Brighton)
address the care of children and young people diagnosed • CLIC Sargent
with cancer up to the age of 25 years. This spans the
care of children and young people across paediatric,
adolescent, and adult health care services.



The following priorities for CYP survivors have been
tested and prototyped:

• The development of survivorship pathways
• Development of a treatment summary and care plan
• Identifying and testing appropriate models of
aftercare:
• Clinician led
• Professionally led shared care including
secondary and primary care
• Nurse led, including telephone and postal
follow up
• Supported self management
• Developing a safe risk stratification framework and
identifying those patients at low, medium and high
risk as a consequence of late effects following
surgery, chemotherapy and radiotherapy treatment.
• Non clinical support issues have been identified and
aftercare models to support these issues have been
tested. These include psychosocial support, and
support for returning to education and employment
through a variety of practical resources: websites,
survivorship education programmes, fertility
education and the importance of exercise

During the testing and prototyping work, and particularly
in building the ongoing evidence, the improvement The practical case studies documenting the improvement
undertaken took into account the Quality, Innovation, work from the nine project sites will be published in
Productivity and Prevention (QIPP) agenda and the March 2012 and examples of the work will be displayed
importance of aligning, where possible, the evidence as part of the market place on 12 October 2011 in order
presented to the key elements of QIPP. to complement and launch this publication of evidence.

This publication is a brief overview of the testing and Further information and access to our earlier publications
prototyping evidence for the nine clinical test sites can be found on our website at:
nationally who have participated in this initiative. www.improvement.nhs.uk/cancer



“
It has been exciting and illuminating to work
cooperatively and cohesively with other
teams and with the close involvement of
patients, to develop a service that is
individualised and focussed on patients’ needs
and wishes rather than on what professionals
alone think is needed.
A health professional
”



SECTION ONE:

Introduction and purpose
of this publication

Welcome to the fifth in a series of publications from the Notes to the reader
NCSI CYP workstream. These publications have charted To ensure that a succinct, robust summary of information
both the progress and captured the improvement work has been provided, a number of commissioners from
and methodology in the form of practical case studies. across the country were invited to critique and comment
on the practicality of the evidence gathered so far from
This publication draws together the evidence so far from their perspective. Their feedback has been invaluable and
the NHS teams testing the concepts of alternative models we are extremely grateful for their time and expertise.
of aftercare for children and young people living with Their comments, queries and thinking will provide a basis
and beyond cancer and provides the initial evidence to for the ongoing work to refine the evidence and data by
help to support the commissioning of effective aftercare March 2012.
services in the future.
Finally, we hope you will find this publication informative
The learning and experience from the testing and and useful as a summary of evidence from our NCSI CYP
prototyping work, presented in this publication, provides test sites up to October 2011. Without the continuing
the tangible evidence of why such models of care should commitment of our patient cancer survivors, our clinical
be commissioned and adopted by teams locally across leads and everyone supporting the testing and prototype
the country. teams it would not have been possible to produce this
publication. We owe them huge thanks and
However, this is ongoing work and from October 2011 appreciation for their commitment.
until the end of March 2012 the evidence will continue
to be refined and presented at a national conference on
the 28 March 2012. Professor Faith Gibson Patricia Morris
Co-chair of the NCSI CYP NHS Improvement Director,
In section 2 of this publication, the initial findings have Steering Group Cancer
been included from a financial modelling exercise in
order to begin to understand the effects on an Dr Gill Levitt Judi Tapp
organisation by implementing an alternative method of Co-chair of the NCSI CYP NHS Improvement,
Steering Group National Improvement Lead
aftercare. The financial evaluation and summary of
findings from the prototyping sites have also been
provided as part of the commissioned work undertaken
by the York University Economics Health Consortium.
This information provides a brief overview of the financial
and productivity evidence focussing on an example of
‘what is possible’. A final report from this initial work
will be presented by The York University team, at the 12
October 2011 workshop in London.



Progress and outcomes
Progress timeline and outcomes - March 2009 to October 2011

MARCH 2010 Testing phase involving the feasibility of alternative models of care
involving 10 centres, treating children and young people with cancer
and delivering after care services, from across the country

SEPTEMBER 2010 Four models of aftercare developed and articulated with supporting
evidence of why they should be commissioned

SEPTEMBER 2010 Produced risk stratification evidence to support the clinical safety
and acceptability of the four models of care proposed

SEPTEMBER 2010 Defined three aftercare pathways for children and young people
following extensive consultation with patients, carers, health
professionals and national charities

SEPTEMBER 2010 Developed a prototype treatment summary and care plan for all
patients living with and beyond cancer to inform patients and health
professionals throughout their lives

OCTOBER 2010 Developed a set of quality indicators to inform the delivery of
aftercare services and drive up the quality of care delivered
consistently across the country

OCTOBER 2010 Commissioned and extracted evidence from a financial modelling
exercise undertaken by The York University Health Economics
Consortium

OCTOBER 2010 Completed an interactive patient experience evaluation initiated to
ensure our proposals and recommendations are in line with patient
and carer needs, expectations and individual concerns

OCTOBER 2010 Developed a set of recommendations for commissioners and other
health professionals to support, inform and influence the decision-
making of specific aftercare models of care

MARCH 2009 - Actively engaged, consulted and worked directly with a wide range
OCTOBER 2010 of health professionals to ensure that the proposals and
recommendations will be clinically safe, appropriate, feasible and
cost effective throughout this initiative



“
The survivorship programme helped me in many
ways. Primarily, it gave me a better understanding
of what help was available after having cancer, as
well as being able to use the folder as a handbook
to refer to short and long term. It also gave me
vital contacts to get in touch with which really
helped a lot and on the whole I think it’s a

”
brilliant idea!
A cancer survivor



SECTION TWO:

Summary of the
overall evidence

This section provides a summary of the range of Overall context
evidence drawn together so far and is divided into In view of the expected exponential increase in the
four parts: number of cancer survivors in the UK, the current levels
of aftercare provision will not be sustainable in the
PART ONE: future. Therefore, the status quo is not an option.
An outline of the three standardised CYP patient
pathways’ that demonstrates consistent care In terms of cost, there is the potential to save a minimum
throughout patient aftercare services. of £3.25 million nationally over the next five years by
applying safe risk stratified pathways (and the four
PART TWO: models of care that emerge from the pathways) for
A synopsis and breakdown of four ‘best practice’ children and young people cancer survivors.
standard models of care that have emerged from
the testing work and aligned to the three The models of aftercare
standardised pathways. The ten working principles and recommendations which
have been outlined, although at this stage are focused
PART THREE: on cancer, can easily be transferred to other children and
The associated evidence relates to the following young people services for those patients needing
key points of the pathway: continuing care for long term conditions. The building of
clinical evidence and knowledge learned may be also
• Entry into long term follow up applicable to adult cancer survivors.
• Clinical level of care
• Evidence-based risk stratification of survivors The intention of this section is to provide the evidence of
• Transition why these models of aftercare pathways and
recommendations should be provided and accessible to
PART FOUR: all patients surviving cancer or needing aftercare services
• A summary of evidence from the children and following their acute episode of cancer.
young people testing and prototyping
(October 2011) The pathways, models of aftercare and ten working
• Health economic evaluation to support principles are recommended by the NCSI CYP based on
models of care the evidence that has emerged from the testing work as
• Patient experience a “national standard” for all CYP centres across the
• Nurse competence country that they can adapt locally to fit in with local
circumstances, priorities and needs.



Children and young people aftercare pathways
The three children and young people aftercare pathways
have been developed and refined during the past 18
months. The final pathways presented in this publication
have evolved from process mapping events with key
stakeholders, cancer survivors, commissioners and
clinicians and through an extensive consultation process.
An integral component to the models of care are the
associated risk stratified levels of care that allow survivors
to access the appropriate level of care related to their
own clinical and psychosocial needs. Encapsulating the
pathway framework is the care coordinator function and
the models of care.



Paediatric aftercare pathway

Care co-ordinator conta

Rapid re-entry for re
symptoms (r

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

lapse, questions/advice/and new
relating to late effects) and SMN MDT
at any point 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
review
Tests and review
Consultant

**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

ary 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)



Teenage and young adult aftercare pathway
Level 1 and 2 supported self management and planned coordinated care pathways

Care coordinator function and automate

Rapid re-entry for relapse
symptoms (relat
at a

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 b

Transition Planning and level of care ***There is flexibility to transfer throu

Both level 1 and 2 supported self mana
IT Systems Level 2 planned coordinated care Treatment summary and care plan is a

TREATMENT PATHWAY



ed surveillance system by HUB PTC

e, questions/advice/and new
ing to late effects) and SMN MDT
ny point along the pathway review Refer to
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
at 16-18 years
Tests and review
Consultant 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)

gh 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



Teenage and young adult aftercare pathway
Level 3 complex care

Care coordinator function and automat

Rapid re-entry for relaps
symptoms (relat
at a

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 determin

Transition Planning and level of care
***There is flexibility to transfer th

Treatment summary and care plan
IT Systems TREATMENT PATHWAY



ted surveillance system by HUB PTC

se, questions/advice/and new
ting to late effects) and SMN MDT
any point along the pathway review Refer to
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
at 16-18 years
Tests and review
Consultant 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

ned 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)

hrough levels of care on the pathways

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



Models of care
The consultant led model
Traditionally, follow up and aftercare for cancer patients
have been provided by medical consultants which may
be within a tertiary treatment centre. However, with the
exponential increase in the number of young adult
cancer survivors, as well as supporting patient choice and
the need to repatriate patients back to their local hospital
as early as possible, this model of care may no longer be
viable, sustainable or appropriate.

In order to overcome this, alternative models of follow
up care have been developed and prototyped.

The shared care model
The shared care model is a professionally led shared care
pathway with a clinical specialist and clinician at a local
hospital or GP in the community in conjunction with a
clinician at the Principal Treatment Centre (PTC). The
care coordinator function is vital to the success of this
model by identifying and providing the best clinical care
for the survivor.

The nurse led model
The nurse led model may include a face to face clinic
appointment, telephone follow up or postal follow up.
This model of care is proving very beneficial particularly
with patients transitioning from young adult to a late
effects or adult services.

The supported self management model
The supported self management model gives the survivor
the ability to actively participate in their follow up care
therefore empowering the patient and building
confidence so the patient has the ability to make
decisions concerning their recovery within a supported
environment. Care coordination, treatment summary
and care planning and remote monitoring / recall systems
are vital for this model to be ‘best practice’. Survivors
need and require robust stable systems in place to allow
for rapid re-entry back into the survivorship pathway at
any juncture.



Entry into long term follow up
The point at which a patient survivor enters long term
follow up varies depending upon the clinical practice
within a particular centre. However, in principle, the
stage at which a young person has completed their
episode of acute cancer treatment and requires on going
support/care is their entry into long term follow up. This
is an important stage from a ‘patient’s perspective’ (and
their carer’s) in terms of their continuity of clinical care.
Psychological support may be required at this or at other
times of change for the young person.

The purpose of long term follow up is to ensure that
patients have continuing care after their acute treatment
phase to ensure that late relapse and clinical late effects
following treatment are monitored, appropriate
screening investigations are planned, treatment
instigated as required, and patients are supported to
return to a ‘normal life’ after their cancer episode.

It is recommended by the NICE CYP IOG that there are
dedicated long term follow up clinics provided for all
patients led by experienced clinicians in this specialty.



Clinical levels of care
With the rapidly enlarging cohort of survivors it is points along the patient pathway resulting in a level of
becoming vital to look for different models to provide care being assigned.
appropriate care. Risk stratification using levels of care is
essential to inform patient pathways and provide the Within the Children’s Cancer Leukaemia Group (CCLG)
basis for effective follow up models. late effects section, a group published defined levels of
care as a means of developing strategies for long term
Survivors of cancer may also develop chronic conditions, follow up in this expanding population of survivors.
so the use of the chronic disease models for different
levels of care fits well with the idea that levels of care can These levels were supported by an earlier publication
be stratified by risk of developing conditions or requiring updated in 2005 entitled “Therapy based long term
on going management. follow up: Practice Statement” by Skinner R, Wallace
WHB, Levitt GA, eds. United Kingdom Children’s Cancer
Risk stratification is based on: disease; type of treatment; Study Group, 2005. (This publication is available online
gender; age; and psychosocial needs. These effect the at: www.ukccsg.org.uk/public/followup/PracticeStatement)
patient at the time of treatment and at certain time

LEVEL 1
Characteristics may include:
• No routine outpatient attendances
• Information on prescription and/or an
educational intervention
• Automated surveillance tests with results
by telephone or post
• Ability to re-access system with/without LEVEL 1
reference to GP

LEVEL 2
• Planned review of care e.g. hospital, LEVEL 2

community, face to face or telephone
• Clinical examination if required
• Patients with co-morbidities
• Those who are unable/decline to LEVEL 3
self manage

LEVEL 3
• 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
Potential model of care being tested



Evidence-based risk stratification of survivors
The following is an extract from research from the University of Birmingham, led by Professor
M M Hawkins and his team; this research was commissioned by the NCSI CYP workstream.
The final report is available at: www.improvement.nhs.uk and www.ncsi.org.uk

Objectives
The overall objective of this risk stratification
investigation was to use the British Childhood Cancer
Survivor Study (BCCSS) and other relevant sources of
information to estimate the risk of specific adverse health
outcomes for different groups of survivors. As defined in
terms of their type of cancer, aspects of treatment
received and other relevant factors. In particular, to
investigate the risks experienced by groups of survivors
defined in terms of modified Wallace levels, to inform
the question of safety of clinical follow up of childhood
cancer survivors proposed by the NCSI-CYP workstream.
Ultimately, this may allow empirical refinements of the
modified Wallace levels based on the observed risks.

Conclusions
For survivors of ALL the modified Wallace levels of follow
up provide good discrimination between groups of
survivors in terms of their risks by 20 years from
diagnosis. From the safety perspective the area of
greatest concern relates to the risk of death from non-
neoplastic causes which are low in absolute terms for
LEVELS 1 and 2 at 0% and 0.1%, respectively, by 20
years from diagnosis. It is now being investigated how The empirical risks of serious adverse health outcomes in
this risk compares with that expected. relation to the modified Wallace level proposed by the
NCSI-CYP workstream have been provided. In terms of
For cancers other than leukaemia, although the safety concerns relating to LEVELS 1 and 2, who do not
allocation into the modified Wallace levels was based on receive hospital-based follow up, this initial investigation
rudimentary treatment information, there is again good provides reassurance that the risk of death from causes
discrimination between groups of survivors in terms of other than recurrence and subsequent primary neoplasm
their risks by 30 years from diagnosis. From the safety is low in absolute terms. The pattern of risk for serious
perspective, again the risks of death from non-neoplastic non-fatal non-neoplastic adverse health outcomes needs
causes are low in absolute terms for LEVELS 1 and 2 at further investigation, which is underway, but in broad
1.5% and 1.6%, respectively, by 30 years from diagnosis. terms this initial investigation provides evidence that
Again, It is now being investigated how this risk proposed LEVELS provide clear and strong discrimination
compares with that expected. in terms of risk.



Transition
Transition is a key component of the survivorship journey Best practice evidence suggests that the next steps
to empower young people as they become responsible must include the following:
for making their own health care decisions. CYP
survivors are assessed and prepared at different time
points across the pathway for transition to adult services. Create a description of transition services that
Transition has been defined as “a purposeful, planned can be adapted locally and ‘fit’ with local
process that addresses the medical, psychological and resources and geographical requirements
educational/vocational needs of adolescents…with
chronic illness as they move from a child centred to adult Establish clear transition policies/procedures/
oriented health care system” (Department of Health, guidelines for Health Care Professionals (HCP)
2006).
Establish clear guidance for adolescents who
There is no definitive age for transition as this is driven by will transition to adult services – identifying
the individual needs of the patient. However, it should who is responsible for care
be flexible, carefully planned and happen as soon as it is
safe and appropriate to do so based on the needs of the Promote good practice as identified by the
patient. Clinical nurse specialists (CNS) play a key role in transition care models already established
transition by assessing the emotional and psychological
readiness of the young person to take more responsibility Identify inequalities especially services in
for their own care, and develop appropriate remote areas and deliver appropriate support
individualised interventions to support them to do so.
They also work with other agencies to develop clear Continue to monitor and assess outcome
pathways and guidelines for the transfer of long term measures for new and existing models of
follow up care between services (RCN Competences transition
2011)
Develop appropriate training resources for
Although transition clinics are being conducted at some HCPs across the models of care which include
Principal Treatment Centres (PTC) there is no consistency transition
nationally.

Adapted from Think Transition – Edinburgh (2008)



“
Risk stratification using levels of care is essential to
inform patient pathways and models of care and
needs to be based on disease, type of treatment,
gender, age and the psycho social needs of the
cancer survivor at the time of treatment and at
times points along the aftercare pathway.
A health professional
”



Demonstrated evidence that takes into account
the core elements of the QIPP agenda
The following evidence has been sourced through a
number of data collection methods which include:

Audits Surveys with stakeholders York Health Economic Consortium exercise

Patient Interviews - patients/carers/ Consultation processes with health care
satisfaction Health Care Professional professionals, patient representatives, Department
surveys of Health and commissioners

Delphi Psychosocial evaluation Comparison of accuracy of data received from GPs
questionnaire tools from Hospital Episode Statistics (HES)
and requirements
analysis

Focus groups/ Post code/demographic Shadow monitoring
workshops/ audits
education events

Additional qualitative data to support the evidence can be found on page 38-39



Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidence
CYP aftercare elements of the QIPP agenda can be sourced from the test site contacts in
pathway section 7

Care coordinator This function is important to streamline and A long term follow up administrator fulfilling
function coordinate survivor aftercare of clinical and the function of a care coordinator, is an
non-clinical services and to ensure the effective conduit for receiving enquiries and
patient is seen by the appropriate person. where necessary, triaging them in a streamlined
This role could be a clinical or non-clinical manner to the appropriate member of the
person as appropriate and be clinical team. (GOSH)
interchangeable along the pathway. There
are cost benefits if this function is carried
out by an administrator, when appropriate
rather than by clinical staff. (Productivity)
Potential to reduce the number of patients
lost to follow up. (Quality)

Automated Lack of a reliable recall system in a mobile GPs have indicated that they have the ability to
surveillance and population of patients impacts on patient recall patients for annual tests, but felt the
re-call systems safety. (Quality) responsibility sits with the PTC as currently there
is no reliable system being available for recall.
(Birmingham)

Rapid re-entry into Pathways can be accessed at any point on Data shows that 9 patients have safely re-
the pathway the pathway reducing the need for entering the pathway. (Birmingham)
emergency admission, late relapse and
prevention and/or exacerbation of late There was general consensus from professionals
effects with the consequent costs. There are on the need for open access for survivors to
cost benefits attached to a streamlined obtain advice. (Bristol)
access process. (Quality, Productivity,
Prevention) Treatment summary and care plan with contact
details provides patient support with clear lines
of re-entry into the system as necessary.
(Birmingham)

Treatment summary Provides base line patient treatment Data from the prototypes site (6 months of data
and care plan summary & care plan information to collection) demonstrates 94% patients with a
support self management. This may lead to treatment summary. 99% of patients had or
reduced cost of after care. Promotes were issued with a care plan; this number has
sharing of information between health increased over the testing period. (NHS
professionals (importantly GPs) and provides Improvement)
the survivors with a comprehensive
summary throughout their aftercare 88% of parents, 83% of the young people and
journey. (Quality, Productivity, 94% of the shared care doctors felt that the
Prevention) TS/CP was useful to them. (GOSH/Christie)

90% of GPs reported the TS/CP information
had a high level of acceptability.
(GOSH/Christie)

There is professional acknowledgement of
importance of treatment summaries. (Bristol)



pathway section 7

Aftercare To inform care planning and aftercare Clinical audit tool provides information to
multidisciplinary clinical decision-making. NICE IOG inform the prioritisation for patients for MDT
team (MDT) compliance. (Quality, Productivity, discussion. (Bristol)
Prevention)

Entry into long term Meets NICE Guidance requirements. Data from economic analysis indicates that the
aftercare Provides continuity of care throughout the pilot sites have the following caseload levels:
life of a patient. For example, the
monitoring of late effects; and supports Leeds: 909
patients return to a ‘normal life’ after their GOSH: 1,263
cancer, including the management of the Bristol: 421
consequences of treatment. (Quality, Birmingham: 635 (York HE)
Prevention)
Continued long term follow up facilitates earlier
diagnosis of silent problems, such as
hypertension, cardiomyopathy, and adult
growth hormone deficiency. (Bristol)

Risk stratification Risk stratification is essential for the safe Initial investigation provides evidence that
clinical care of patients to inform levels of proposed levels of care provide clear and strong
care, patient pathways and effective discrimination in terms of risk. (Risk
aftercare models to meet individual needs. stratification exercise led by The University
Appropriate levels of after care produces of Birmingham, Professor Mike Hawkins)
cost benefits & enhanced productivity.
(Quality, Innovation, Productivity, Professional consensus on the need for risk
Prevention) based plan for follow up after assessment at
specialist aftercare service. (Bristol)

Following the initial risk assessment the
complexity of patient need should influence the
location of their aftercare. (Bristol)



pathway section 7

Psychosocial Survivors should be assessed and provided The initial findings indicate the following:
assessment with the necessary psychosocial intervention
at points along the pathway. This is better The psychosocial screening tool can be used
for patients and has the potential to prevent across the patient pathway as a repeated
exacerbation of problems and more costly measure, which will provide a better patient
interventions. (Quality, Innovation, experience as it will allow provision of the right
Productivity, Prevention) level and amount of care.
There will be a preventative impact in terms of
severity of problems, as they will be picked up
earlier, which will overall improve the patient’s
quality of life.
Using the screening tool and the accompanying
action plan will allow the patient to ask for help
or indicate they would like help, which will
allow quicker access to the referral pathway.
The screening tool does not need a qualified
mental health professional to administer it. This
may reduce the need for specialised staff to
implement the tool making it accessible and
easy to use. (RMH)
A study involving patients and their parents.
There is some evidence that structured
psychological support would be helpful to get
some young people back on track once the
treatment phase is over. Though some seem to
escape relatively intact, the quality of life of
others has been severely compromised, socially,
occupationally and aspirationally. (Cambridge)

Models of care Risk stratified models of aftercare need to Defined principles of late effects model of care
meet the clinical requirements of individual – principles can be found in section 3
patients; they need to be effective and Robust case studies demonstrating effectiveness
interchangeable along the pathway. They of Models of Care in a series of previous CYP
need to be accessible, locally based where publications (NHS Improvement)
possible and allows for patient choice.
(Quality, Innovation, Productivity,
Prevention)



pathway section 7

Clinical levels of care With the exponential increase of survivors Confidence in professionals ranked as the most
comprising: of childhood cancer the traditional model of important factor in choice of location for follow
clinician led care is no longer viable up. (Bristol)
Appropriate level of care is important to
meet patient need and choice safely and Standardised pathways and proposed models of
cost-effectively. (Quality, Innovation, care have been clinically validated by the Risk
Productivity, Prevention) Stratification Exercise. (Risk Stratification
exercise led by The University of
Birmingham, Professor Mike Hawkins)

The number of patients risk stratified to
appropriate models of aftercare demonstrates
the effectiveness of this framework. (Leeds,
Birmingham, GOSH, Bristol)

Clinician led Estimates indicate that the number of survivors
will rise over the next twenty years, leading to
increased costs. See future cost estimates in
York HE summary below)

Nurse led 75% of patients value the nurse led clinic.
Survivors were generally satisfied with the
quality of information received and the manner
in which it was communicated. (GOSH/Leeds)

More than ¾ of the young people (78%) found
it easy to discuss issues with the nurse and 75%
understood their treatment and late sequelae.
(GOSH)

97% agreed or strongly agreed that they were
happy to see the specialist nurse for their clinic
appointment and that they would be happy to
return to the clinic for continuing follow up.
(Birmingham)

The verbal and written information received
was appropriate and clearly explained for 97%
of respondents and 68% of patients would
prefer to attend for a Nurse-led appointment
rather than a consultant-led clinic.
(Birmingham)



pathway section 7

Professionally led The Pan-Thames survey included three primary
shared care treatment centres, GOSH, UCLH, RMH with 22
Paediatric Oncology Shared Care Units (POSCU)
in the north Thames area and 20 POSCUS in
south Thames region. There was overwhelming
support from the centres who answered the
questionnaire. All centres would provide Level 1
surveillance and many where able to provide
investigations to level 2 patients (e.g. ECHOs).
(GOSH)

Providing a local service in Brighton, reduces
travel time and costs to patients who would
otherwise have to travel to St Georges,
therefore reducing time off work/school.
(Brighton)

Supported self GP follow up service results indicate an overall
management willingness from primary care physicians to
partake in annual (or preferably less frequent)
health questionnaires on behalf of their
patients. 94% were happy to complete a
health-related questionnaire, 90% felt the
questionnaire was an appropriate length and
59% indicated that they would be happy to
complete the questionnaire on an annual basis.
(Birmingham)

Results of a three month GP shadow pilot
demonstrated 78% of patients were identified
as suitable for supported self management.
(Leeds)



pathway section 7

Aftercare planning To provide individual & responsive care it 65% of GPs were willing to arrange aftercare
Regular aftercare and needs to be delivered in the most examinations & monitoring. (Leeds)
review of care plan appropriate location and provided by the
most appropriate model of care. (Quality, The Birmingham GP aftercare results as shown
Productivity, Prevention) on the previous page

“Patient Travel Survey” demonstrates that
there is a cost benefit in travel time and money
(70% less in cost & distances travelled) if
patients attended locally based aftercare
services rather than traditionally attending
clinics at the PTC. (Brighton)

A post code analysis demonstrates that 70% of
survivors were willing to travel 60 minutes for a
follow up clinic. (Bristol)

Recalling patients using GP systems is not
difficult, the number of cancer survivors
transferring back to primary care could be very
small per GP surgery therefore GP systems
could be used as a tool for recalling for
surveillance testing. (GOSH)

Patient and parent Non clinical aspects of care are essential to A contact card for direct access to Care
education and support survivors to live as normal a life as coordinator / HCP and website information
psychological support possible after the effects of cancer have been developed to support and inform
treatment and the associated late effects. long-term survivors by the provision of
(Quality, Innovation, Prevention) supplementary information to that already
provided in the clinical setting. Website data
shows 635 hits over the past 6 months since its
inception. (GOSH)

Information provided to patients attending
clinic show many patients received information
on more than 1 subject.
On average:
level 3 = 2.8 subjects
Level 2 = 2.7 subjects
Level 1 = 2.2 subjects

With more than 12% of Level 2 & 17% of Level
3 patients identified unmet needs related to
psychology. (Bristol)



pathway section 7

Results of tests and See point on the pathway – clinical models Twice as many investigations are needed for
review with patients by of care Level 3 patients versus Level 2 patients. The
health professionals needs of Level 2 patients are not
inconsequential when compared to Level 1 -
indicating resource implications. (Bristol)

65% of GP’s are willing to organise certain
follow up examinations and Investigations.
(Leeds)

77% of GPs were happy to perform routine
toxicity monitoring on patients (including
annual BP and urinary protein: creatinine ratio)
only 53% had the ability to recall patients for
these annual tests. (Birmingham)

Referral to specialist Early intervention / prevention could avert Review of fertility services shows marked
clinic as required more costly care if undetected conditions improvement in referral to reproductive
are left untreated. medicine and discussion of fertility options.
(Cambridge)
Follow up services need to be accessible to
provide survivors with the right information Thyroid disease is common amongst survivors of
to make informed decisions related to the childhood malignancy and is reported by 12.4%
late effects of treatment and access the of subjects in the BCCSS. (Birmingham)
appropriate specialist clinics at the
appropriate time along the survivorship Growth hormone deficiency was less likely to be
pathway. (Quality, Productivity, diagnosed in survivors not on follow up (18.2%
Prevention) vs 6.6%) and survivors were less likely to receive
growth hormone replacement if they were not
being followed (17.1% vs 5.6%). (Birmingham)

Twice as many investigations are needed for
level 3 patients versus level 2 patients. (Bristol)

Implementing five yearly follow up
appointment, with necessary investigations e.g.
echocardiograms performed on the same day,
reduces unnecessary appointments.
(Birmingham)



pathway section 7

Survivorship To enable patients to live as full and normal There is early indication that positive changes
programmes a life as possible by providing them with have resulted for attendees of survivorship
resources and information to help support programmes six months after attending the
and manage their after effects following course: Improvement in anxiety scores 52%;
their cancer treatment. (Quality, Improvement in depression scores 53%;
Innovation, Prevention) Improved body Image 60%; Social difficulties
improved 63%. This data will be interrogated
over a five year period to provide more long
term findings. (Christie)

The ‘On Target’ project currently under Component of the planned programme include
development aims to develop a service advice on:
model which will ensure TYA survivors are • Health risk assessment, surveillance and
supported after a diagnosis of cancer and monitoring
its treatment. (Quality, Innovation, • Healthy lifestyle and physical rehabilitation
Productivity, Prevention) • Education, employment and finance,
• Psychosocial and emotional wellbeing
• Survivor information and peer support
(Bristol)

Exercise programmes Fatigue is a chronic problem for cancer An exercise DVD has been designed by survivors
survivors – tailored exercise programs to for survivors. (Cambridge)
improve physical function and mental
wellbeing enable patients to return to an Value of exercise has been identified through
effective quality of life after treatment for survivorship programmes. (Christie)
cancer. This work has shown that this
supports survivors returning to a normal life Initial pilot of exercise questionnaire suggests
and employment - contributing to the little information is given by many specialists
economy sooner than they may have been but that young people want this information.
able to do so. (Quality, Innovation, Initial a review of 14 specialists (across
Productivity, Prevention) paediatric oncology and adults) suggests a lack
of knowledge / awareness of this information
and this was thought to be due to
physiotherapists, however, review shows an
inadequate number of physios are able to
provide this as an independent service.
(Cambridge)



pathway section 7

Transition at stages A seamless transition from paediatric care After patients have had a transition
throughout the to young adult and again into long term appointment and no longer need hospital
pathway aftercare is essential for all patients to surveillance; around 30% of patients could be
provide effective continuity of care. discharged to primary care with regular
Effective transfer has direct patient surveillance. (GOSH)
benefits. (Quality, Productivity,
Prevention) Extensive work by a team in Edinburgh has
shown that an effective transition service
requires an effective and proactive approach.
Core principles that they have developed
have been adapted and are referenced in
section 2 - part 3



Health economic evaluation to
support models of care
The economic costs of cancer survivorship services
for children and young people – an examination of Costs to survivors and their families
the potential savings through risk stratification and Attending treatment, impact of late effects
the adoption of new models of care on employment and fertility

York Health Economics Consortium has been conducting
a review of the economic costs of cancer survivorship
services to help inform the work of the NCSI. This
summarises some of our key findings and
recommendations from our work so far. A more detailed
report will be provided to NCSI in October with the final
conclusions.

The costs of child cancer survivorship services are
complex. The trajectory of late effects and complications
once a person has survived cancer are unpredictable.
Other care costs Direct health costs
The requirements that survivors have vary from person to
Local authority support, Primary, secondary and
person depending on the type of illness they have had voluntary sector community care
and the treatment that they received during their acute
phase.

The full economic cost of cancer survivorship services for Data based on a Department of Health case note review
children and young people includes a number of factors, provided a basis for estimating the costs of secondary
summarised below: care survivorship services. This found that the average
cost per patient per year over five years was as follows:
Costs
The starting point for this exercise was to ascertain and • Level 1: £63
gather the procedures and costs of NHS childhood • Level 2: £115
cancer survivorship services provided at the four pilot • Level 3: £162
sites (Birmingham, Bristol, Great Ormond Street and
Leeds). The following challenges were encountered:: In order to calculate a full economic cost of survivorship
services, additional support costs of providing the service
• Not all sites have easily accessible caseload and activity need to be included, such as capital costs, overheads and
information administrative costs. Tariff costs have therefore been
• Sites have different service models which are not easily used as a proxy cost measure in the absence of detailed
comparable audit analysis of the costs of providing services at each
• Follow up services are not commissioned separately level. On the basis of cost data obtained from one of our
from other services (e.g. they may be part of an sites it has been found that this is approximately
oncology contract) so cost information is difficult to equivalent to the cost of providing a consultant-led clinic
obtain annually for each survivor. An average for consultant-led
clinics has been calculated at £290, £200 for nurse-led
clinics, £24 for telephone clinics and £20 for virtual
review, whereby the secondary care team carries out an
annual review of survivors, based on data provided by
GPs.



Costs of different models of care based on a caseload of approximately 900 survivors

Without risk With risk-stratification Proposed new
stratification (£) (current model) (£) care model (£)

Clinic costs - Level 1 n/a 6,166 3,378
Total clinic costs 263,320 196,546 135,476
Investigations 43,500 43,500 43,500
Care-co-ordinator (Grade 4) n/a n/a 28,500
Key worker (Grade 7) n/a n/a 56,000

TOTAL 306,820 240,046 263,476

Survivors require investigations as part of their aftercare This indicates a potential annual cost saving from risk
and the number and type vary depending on the type of stratification of £66,000, or around 22%. The proposed
illness and treatment they have received. The data new model of care shows potential to reduce outpatient
gathered by the Department of Health case note review clinic costs still further but the introduction of new
was used to calculate the additional annual cost of a set initiatives as part of the high quality model of future
of standard investigations including blood tests, after-care carries additional costs which will make this
echocardiograms, x-rays and MRI and CT scans. This option more expensive. However, the freeing up of clinic
established a measure of consistency for the costs of time should give additional capacity for services to cope
survivorship services which can vary considerably for each with increased numbers of survivors in the future.
individual over a long period of time.
The impact of the growth in the numbers of survivors will
Through interviews and data gathering from the four accentuate the growth of secondary care costs,
pilot sites, a model to show the potential costs of particularly given the NICE guidance recommendations
providing survivorship services in three ways was around maintaining lifelong contact with childhood
constructed: cancer survivors. The estimated future costs have been
modelled, based on estimated annual growth in
• A largely consultant-led outpatient service for all survivorship numbers of 0.95% and inflationary growth
survivors in costs:
• A risk stratified service based on the Wallace levels
of risk
• A high quality model for future after-care based on
NICE guidance around lifelong contact with survivors
and the new NHS improvement care pathways


Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence

Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence

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