Cancer survivorship and self management a research programme: Possibilities for collaboration Macmillan Survivorship Research Group 18 th November 2009

2 Claire Foster, PhD, CPsychol Head of Macmillan Survivorship Research Group Health Psychologist Supporting self management of cancer survivors Exploring patterns of recovery following primary treatment Developing interventions to support self management Implications of genetic testing for cancer predisposition

3 Phil Cotterell, PhD, RGN Senior Research Fellow UK wide survey to assess self management problems following primary cancer treatment Service user involvement in research Exploratory study of strategies people use to manage problems experienced following cancer treatment

4 Deborah Fenlon, PhD, RGN Senior Research Fellow Areas of research: – cohort study of recovery of wellbeing in colorectal cancer survivors – narrative interviews with cohort participants – cohort study of joint pains in breast cancer survivors – the experiences and information needs of older breast cancer survivors

5 Survey of cancer survivors 40% said life was affected ‘more than a little’ by cancer 53% harder dealing with emotional than physical needs 60% experienced problems in a close relationship 32% reported job disruptions or loss 72% reported depression at some point in their recovery 70% felt their physician had been unable to help with their non medical needs (Lent 2007)

6 Macmillan Survivorship Research Group Understanding recovery and self management following primary treatment Co-creating and testing interventions to support self management User involvement and including those typically underrepresented.

7 1.Problematic event (cancer type, stage and treatment) 2. Coping appraisal and strategies 3. Problem related coping efficacy 4.Environmental supports and resources 6. Problem resolution 7. Restoration of health and wellbeing 5. Personality and affective dispositions Model of restorative well-being in cancer survivorship (Adapted from Lent, 2007)

8 Our programme of research –Cohort of colorectal cancer survivors –Survey of self management of problems following radiotherapy/chemotherapy –Online intervention to support self management of problems experienced by cancer survivors

9 Cohort study: Colorectal cancer Aims Explore restoration of health and well-being following primary treatment Identify who is at risk of problems Explore factors which hinder/enhance restoration of health and well-being Make recommendations for where interventions/services should be targeted to support survivors Design 720 people (pre-surgery up to two years post treatment) Questionnaires and narrative interviews Five times over 2 years and then find funding for long term follow up.

10 Measure of health and wellbeing QLACS [Avis et al., 2005] measures 12 domains of cancer survivorship; –7 generic domains (pain, fatigue, positive and negative feelings, cognitive and sexual problems, social avoidance) and –5 cancer specific domains (financial problems, family distress, recurrence distress, appearance concerns, benefits from cancer)

11 Factors which may affect recovery of health and well-being Cancer type and stage Socio-demographic details (age, gender, ethnicity, educational attainment, marital status, and socioeconomic status etc) Individual characteristics (style of coping, social support, self esteem, confidence to manage problems etc) Environmental supports and resources

12 Measures Coping Orientation to Problems Experienced (Carver, 1989) assesses how individuals manage stressful life events. Ways of Coping Questionnaire (Folkman & Lazarus, 1985) assesses thoughts/acts used to deal with stressful encounters. Illness Perception Questionnaire – Revised (Moss-Morris et al., 2002) assesses beliefs about illness. Monitoring and Blunting Style Scale (Miller, 1987) assesses ways people deal with stressful life events. Life Orientation Test-Revised (Scheier & Carver, 1985) assesses generalised expectancies for positive versus negative outcomes. Rosenberg Self-Esteem Scale (Rosenberg, 1965) Self-Efficacy for Managing Chronic Disease (Lorig et al., 2001)

13 Environmental supports and resources: Access to/utilisation of health, social care and other supports; residential/neighbourhood quality: We will work with expert advisors[1] and Steering/User Reference Groups to generate study specific questions.[1] Some items from the OARS Multidimensional Functional Assessment Questionnaire (Fillenbaum 1988) will be piloted e.g. for service use and support. MOS social support survey (Sherbourne & Stewart, 1991) measures social networks and support.

14 Survey of self management post treatment Aims Assess the range of problems experienced following completion of primary radiotherapy/chemotherapy. Identify how these problems are self managed. Identify factors associated with self management of problems. Identify factors that hinder self management of problems. Identify resources required to enhance self management.

15 Survey We will recruit people as they complete their primary radiotherapy/chemotherapy We aim to recruit 1020 people from 5 cancer centres in the UK, including breast, prostate, colorectal and less common cancers. We will repeat the survey with the same participants at three time points over one year.

16 Online intervention to support survivors Aims Develop an online resource, bringing together clinical and lay expertise, offering tailored self management support following primary treatment Test the value of the intervention in increasing self efficacy to self-manage cancer related problems following primary treatment

17 Service user involvement Definition –We use the term ‘service user’ to mean people affected by cancer including patients, their carers, families and friends. Why involve service users? –Increase relevance & reliability of research; Increase access to participants & recruitment to studies; Collect more useful information; More ethical; Changing expectations; Policy & practice developments.

18 Service user involvement Aims 1.Further develop and integrate the involvement of people affected by cancer in our research activities strategically and at the level of research practice. 2.Broaden the range of people affected by cancer we work with. 3.Offer a variety of involvement opportunities.

19 Service user involvement Project level ―For each research project we will establish a Steering Group (including two research partners/service users) and a User Reference Group (chaired by a service user and attended by members of the research team involved in the project). Strategic level ―We will form a Service User Research Advisory Group [SURAG] which will take a strategic view of our entire research programme.

20 Service user involvement Mechanisms of involvement e.g. virtually via phone/ conversations, and newsletters or via outreach work, and face to face individual and/or group meetings. We are working to find innovative ways to include groups typically under represented in research e.g. older people, those with low literacy, low socio-economic status, black and minority ethnic groups, and those in remote areas. Building on experience e.g. The Listening Study; Exploring Research Experiences of Patients from BME Communities Study; Exploring Breast Cancer Experiences of Older Women Study.

21 Outputs Map recovery of health and well being after cancer Find out what helps/hinders recovery Gather a large database on ways people use to manage their problems Develop an internet based intervention based on this knowledge Develop and test a variety of interventions with other researchers based on the knowledge gathered.

22 Questions Measures –Are these the right/important ones? –Are they being used by other groups? Underrepresented groups –Who are they? –How do we ensure we reach them? Are there particular questions we should be asking about carers/relatives?

23 Discussion points What might the areas for collaborative work be? Are there new pieces of work which could be undertaken jointly with other WUN partners which would enhance the programmes of both universities? Are there pieces of work which have been conducted by WUN partners which would be useful to replicate in the UK? Are there pieces of work which have been conducted by Southampton which would be useful to replicate by other WUN partners? Are there on-line interventions that are being developed that could be carried out jointly?

24 Macmillan Survivorship Research Group Lisa Bryan, Research Group Secretary School of Health Sciences, University Rd, Highfield, University of Southampton, UK +44 (0)