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National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
Review of Research into Cancer Survivorship
John Neate
Overall aim of NCSI
The Cancer Reform Strategy
(2007) outlined the need for a NCSI
to improve the care and support
provided for those living with
and beyond cancer
National Cancer Survivorship Initiative
NCSI work streams
• Active and Advanced Disease
• Self Management
• Assessment and Care Planning
• Work and Finance
• Consequences of Treatment
• Research
• Children and Young People
• Supported by NHS Improvement (Adults)
National Cancer Survivorship Initiative
Research work stream – overall aims
• To identify what is – and what is not – known about the
health and wellbeing and care and support of cancer survivors
• To prioritise a future research agenda to
tackle the ‘not knowns’
• To work closely with the National Cancer Research Institute
(NCRI) in informing the commissioning of a research
programme to address key identified priorities
National Cancer Survivorship Initiative
The approach
• Mapping of survivorship ‘journey’ – carried out for prostate,
lung, breast and colorectal cancer and for the less common
cancers (Cancer 52) – involving internal and external
stakeholder consultation
• Evidence review to assess the knowns
and not knowns of survivorship research
• Prioritisation of research
questions for new research programme
National Cancer Survivorship Initiative
Cross-cutting survivorship issues
• Information
• Access to services
• Primary care
• Age
• Psychosocial issues
• Marital status
National Cancer Survivorship Initiative
• Implementation
of good practice
• Recording data
• Issues specific to the less
common cancers,
e.g. diagnostic delays
Evidence review
• Being carried out by CECO and COMPASS supportive
and palliative care research collaboratives
• Will inform the Research Workstream and the other
six NCSI Workstreams
• ‘Evidence’ considered includes published literature + unpublished
reports and studies, ongoing research and collections
of quality of life data
• Consultation is taking place with the research,
charity and cancer survivor communities
• The emphasis will be on finding practical solutions
National Cancer Survivorship Initiative
Possible priorities?
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Research that builds on existing work – another push will take us there
Applied research that will make a quick difference to survivors
Cost and cost-benefit
Impact – on a large number of people or a smaller group to a significant extent
Feasible to be carried out – and implemented
Impact on carers – economic aspects
The ‘unknown unknowns’
Understanding of barriers to implementation
Areas not funded by existing funding streams
Others??
National Cancer Survivorship Initiative
Some thoughts
• Today is a key part of the priority setting process
– but sits in a wider consultation process
• Need to deliver improvements as fast as possible – a practical focus
• Have to square the emerging research themes with the interests of
potential research funders
• Need to ensure that a continuous loop of research learning and
implementation leads to ongoing improvement in survivorship
support – this cannot be a ‘one off’ exercise
• Need to produce a practical document for healthcare providers,
commissioners, survivors and researchers
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
What does the evidence review tell us?
Professor Julia Addington-Hall
Comprehensive review of the
evidence base on cancer
survivorship for NCSI: update of
work in progress
J. Addington-Hall, A. Richardson, M. Sharpe,
D. Stark, C. Foster & Z. Amir
Aims of comprehensive review
1. to systematically scope and collate the research
evidence regarding health and well-being of cancer
survivors
2. to systematically scope and collate research evidence
regarding interventions designed to improve the health
and well-being of cancer survivors
3. to identify priority areas for further research
4. to identify areas for systematic review
1. Scoping of literature
reviews regarding
health and well-being
of cancer survivors
Claire Foster, Issy Scott, Nikki
Jarrett, Ziv Amir, Sarah
Brearley, Zoe Stamataki -
2. Scoping of
interventions
designed to improve
the health and well
being of cancer
survivors
Lucy Ziegler, Dan Stark ,
Michael Sharpe, Laura
Hodges, Jane Hook, Richard
Garry, Alison Richardson
1. Methods
• Search strategy developed with librarian
• Rapid scoping focused on ‘health and well-being’ of cancer
survivors including physical, psychological, social, and practical
aspects
• BNI; CINAHL; EMBASE; Medline; Psychinfo; Web of Science;
Cochrane
• Published literature reviews 2000-2009; targeted search for
primary data papers in past 5 years. Grey literature.
• Published research evidence identified and collated regarding
problems and needs of cancer survivors aged 18+
• Quality Score 2+
Psychosocial papers
4,051 papers identified  39 relevant (abstract)  17
reviews included
Cancer type:
Focus of reviews:
• Breast cancer = 5
• Quality of life = 5
• Ovarian cancer = 2
• Psychosocial
consequences = 5
• Prostate = 1
• Distress = 2
• Testicular = 1
• Rural women/
Coping/Behaviour
change/ Interventions &
survival/Information
needs = 1 each
• Mixed cancer types = 8
Physical and practical papers –
5,112 papers identified  42 relevant (abstract)  9
reviews included
Cancer types:
Focus of reviews:
• Ovarian = 1
• Fatigue = 2
• Prostate = 1
• Employment = 2
• Testicular = 1
• General symptoms = 2
• Various = 6
• Aging = 1
• Unmet needs = 1
• Sexual functioning = 1
II. Methods
• Search strategy developed with librarian using systematic review
and RCT filters
• Interventions: Any intervention that specifies relief of one of the
target problems in adults as primary aim.
• Target problems: Depression, Anxiety and fear of recurrence,
Emotional distress, Fatigue or Pain.
• Published systematic reviews and RCTs 1996-2009
• Amed, Embase, Psychinfo, Medline, HMIC and Cochrane Library
• 183 reviews were identified and screened for inclusion. 79
qualified.
• Over 9000 RCTs identified: when good quality SRs, will catalogue
RCT from date of SR.
Focus of systematic review
Mental well-being
Number of
systematic reviews
Depression
9
Anxiety
8
Distress
8
Fatigue
7
Pain
17
Physical symptoms
Social functioning
Impaired quality of life
Treatment induced physical symptoms
10
Disease induced physical symptoms
10
Relationship difficulties
3
Employment difficulties
1
6
Next steps
I.
II.
• Extract key findings from
included literature reviews
• extract data on effectiveness
of interventions from SRs
• Strategic scope for primary
data papers in past 5 years
RCTs
• Compare and contrast with
mapping reports (bowel,
breast, prostate, lung and
rarer cancers)
• Consider grey literature and
research in progress
identified in consultation
exercise
• Reduce number of RCTs
identified by applying revised
cut-off date (informed by
systematic review inclusion
dates)
• Screen remaining RCTs for
inclusion/exclusion
• Extract data on type of
intervention
Questionnaire survey.
Aims
• What are the views of stakeholders about the most
pressing research questions that pertain to the health and
well-being of cancer survivors?
• What is the focus of current & planned research in the
UK?
• Are there large datasets in existence that could
potentially be accessed for the purposes of secondary
analysis?
Design
List of key stakeholders drawn up
Stakeholders emailed questionnaire
Online questionnaire advertised
Responses categorised
into key themes
Consultation meeting with
purposeful sample
Main criteria: considered ‘expert’
• Compass & CECo
recommendations
• Original respondents to NCRI
questionnaire
• NCSI work stream members
• Relevant NCRI Clinical Studies
Groups members
• Participants of mapping exercises
List of prioritised research themes
• Charities & statutory organisations
Sample description (n = 204)
• Academic researcher = 61
• England = 150
• NHS researcher = 29
• Wales = 2
• Cancer charity/voluntary
organisation = 24
• Scotland = 16
• Cancer survivor = 27
• Carer/family member = 8
• Professional
organisation/committee = 9
• Other = 39
• Unknown = 7
• Northern Ireland = 6
• UK wide = 10
• Not UK = 2
• Not known = 18
Key themes
• Active or advanced stage
of disease
• Carers
• Lack of data on
psychological, social and
physical needs
• Self-management
• Late effects
• Surveillance for late
effects and cancer
recurrence
• Return to work or
education and financial
matters
• Psychological impact
• Organisation and delivery
of services
• Outcome measurement
Consultation Event.
How to use your keypad
• Simply press the button that corresponds
with the option you wish to vote for.
• If you press the wrong button or change
your mind, don’t worry just press again.
The only vote that will register is your
last vote.
• All responses are anonymous
Are you mainly interested in cancer survivorship
because :
1)
you have (or have had) cancer
2)
you care clinically for cancer patients
3)
someone you know has had cancer
4)
you provide services for cancer patients
5)
you commission services for cancer patients
6)
you make policy about cancer
7)
you fund research
8)
you do research
9)
you campaign about cancer
4%
10)
you support people with cancer
5%
8%
19%
5%
10%
1%
7%
5%
34%
III. Please select the topic you think is MOST important,
followed by the second and third.
1)
Understanding need
2)
Psychological issues
3)
Carers and families
4)
Self-management
5)
Consequences of cancer & TMT
6)
Lifestyle management
4%
7)
Finance
5%
8)
Service organisation & delivery
9)
Outcome measures
10) Co-morbidities
Advanced stage + surveillance removed
26%
12%
10%
8%
19%
15%
0%
0%
Emerging priorities
Understanding
need
Consequences of
treatment and
cancer
Service
organisation and
delivery
Psychological
interventions
30
25
20
15
10
Carers and families
5
Self-Management
interventions
0
We are (about) two thirds of the way through…..
June 2009
October 2009
Comprehensive, timely – and useful