National Cancer Survivorship Initiative National Cancer Survivorship Initiative Review of Research into Cancer Survivorship John Neate

National Cancer Survivorship Initiative 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 Assessment and Care Planning Consequences of Treatment Children and Young People Supported by NHS Improvement (Adults) Self Management Work and Finance Research

National Cancer Survivorship Initiative NCSI work streams Active and Advanced Disease Assessment and Care Planning Consequences of Treatment Children and Young People Self Management Work and Finance Research 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 Implementation of good practice Recording data Issues specific to the less common cancers, e.g. diagnostic delays

National Cancer Survivorship Initiative practical 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inform the Research Workstream and the other six NCSI Workstreams ‘Evidence’ considered includes published literature + unpublished reports and studies, ongoing research and collections of quality of life data Consultation is taking place with the research, charity and cancer survivor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? 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 What does the evidence review tell us? John Neate & Professor Julia Addington-Hall

National Cancer Survivorship Initiative What does the evidence review tell us? Professor Julia Addington-Hall Official position ????????

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 ; 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: Breast cancer = 5 Ovarian cancer = 2 Prostate = 1 Testicular = 1 Mixed cancer types = 8 Focus of reviews: Quality of life = 5 Psychosocial consequences = 5 Distress = 2 Rural women/ Coping/Behaviour change/ Interventions & survival/Information needs = 1 each

Physical and practical papers – 5,112 papers identified  42 relevant (abstract)  9 reviews included Cancer types: Ovarian = 1 Prostate = 1 Testicular = 1 Various = 6 Focus of reviews: Fatigue = 2 Employment = 2 General symptoms = 2 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 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 reviewNumber of systematic reviews Mental well-being Depression 9 Anxiety 8 Distress 8 Fatigue7 Pain17 Physical symptoms Treatment induced physical symptoms 10 Disease induced physical symptoms 10 Social functioning Relationship difficulties 3 Employment difficulties 1 Impaired quality of life6

Next steps I. Extract key findings from included literature reviews Strategic scope for primary data papers in past 5 years Compare and contrast with mapping reports (bowel, breast, prostate, lung and rarer cancers) Consider grey literature and research in progress identified in consultation exercise II. extract data on effectiveness of interventions from SRs RCTs 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 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 Charities & statutory organisations List of key stakeholders drawn up Stakeholders ed questionnaire Online questionnaire advertised Responses categorised into key themes Consultation meeting with purposeful sample List of prioritised research themes

Sample description (n = 204) Academic researcher = 61 NHS researcher = 29 Cancer charity/voluntary organisation = 24 Cancer survivor = 27 Carer/family member = 8 Professional organisation/committee = 9 Other = 39 Unknown = 7 England = 150 Wales = 2 Scotland = 16 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 10)you support people with cancer

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 7)Finance 8)Service organisation & delivery 9)Outcome measures 10)Co-morbidities Advanced stage + surveillance removed

Emerging priorities

We are (about) two thirds of the way through….. June 2009October 2009 Comprehensive, timely – and useful