National Cancer Survivorship Initiative Supported Self-Management Workstream

1. National Cancer Survivorship InitiativeSupported Self-Management Workstream Lynn Batehup Nicola Davies Network Development Programme Event 18th and 19th March, 2010

2. Aims: • Clarify self-management and self-management support • Rationale for supported self-management • What is the evidence and who benefits? • Focus on outcomes

3. Self-Management and Cancer People generally manage problems associated with their cancer and its treatment as part of their daily lives, and may want to have an active role in tackling them (Foster et al., 2009). “People have different dispositions, supports, and resources, resulting in individual differences in recovery and restoration of health and wellbeing, self management activity, and the need for self management support” SELF-MANAGEMENT SUPPORT: “what health services do to aid and encourage people living with a long term condition, to make daily decisions that improve health related behaviours, and clinical and other outcomes.” (NCSI Self-Management Workstream, adapted from ‘Co-Creating Health,’ The Health Foundation, 2008).

4. Components of Cancer Survivor Self-Management (Foster et al., 2009) Problems After Cancer Treatment Effects of treatment Abandonment Lack of information Lack of support Emotional difficulties Social/relationship difficulties Physical/functional changes Sources of Self Management Support Healthcare workers Families & friends Accessing information Networking with other cancer survivors Work & finance Organised support Self Management Strategies Psychological problems: Altered outlook/priorities Managing emotions Self resourcefulness Social problems: Proactive socialising Sharing experience Resisting contact Managing work/finance Physical problems: Simple strategies Complex strategies Problem Resolution LIVE WELL AFTER CANCER Personal Resources External Resources

6. WHERE IS THE EVIDENCE? • Self Care Support: The Evidence Pack. Summary of work in Progress (2005-07). Department of Health. • Supporting self-management of people affected by cancer (2005). Foster C. Hopkinson J. Hill H. Wright D. Macmillan Research Unit, University of Southampton. • Patient–focused interventions. A Review of the Evidence. Angela Coulter Jo Ellins, Picker Institute and The Health Foundation. 2006. • Self-management programmes for cancer survivors: a structured review of outcome measures (2009). Self-Management Workstream NCSI/Macmillan Cancer Support. Nicola Davies. • Self-management support: a review of the evidence (2009). Deborah Fenlon and Claire Foster. Macmillan Research Unit for the Self Management Workstream. • Self-management of problems experienced following primary cancer treatment: An exploratory study (2009). Claire Foster, Liz Roffe, Issy Scott, Phil Cotterell, Macmillan Survivorship Research Group, University of Southampton. • Self-management support for cancer survivors: Guidance for developing interventions. An update of the evidence (2010). Nicola Davies and Lynn Batehup. Self-Management Workstream NCSI/Macmillan Cancer Support.

7. Evidence – Who Benefits? Self-management support is more than courses! Personalised assessment and management plan. Risk stratification – tailoring of support to need. Tailored information that enhances knowledge. EVERYBODY benefits from A partnership relationship with their health professionals which enables self-management.

8. Evidence of Benefits

9. Evidence of Benefits

10. Emerging Evidence: The Internet

11. Expert Patient Programme - UK Generic lay-led, 6-week small group (n=10-20) for people with LTCs, comprising 2.5-hour sessions  self-referral. Motivated by the ‘Your Health, Your Say’ consultation for LTCs – guidance from Lorig (CDSMP). Based on self-efficacy - weekly goals and action planning. Randomisation to immediate EPP (n=248) or 6-month waiting list (n=273) - baseline and 6-months assessment. Immediate EPP group demonstrated significant increase in self-efficacy, energy levels, psychological well-being, communication with physician, and reductions in social role limitations and health distress. No improvement in exercise, pain, diet, or healthcare utilisation. Cost-effectiveness likely at the conventional level of decision-makers willingness-to-pay.

12. New Perspectives– UK Cancer-Specific Macmillan Cancer Support • Based on the chronic disease SMP. • Modified 6-week course for cancer survivors. • Small group meet each week for 2.5-hours. • Trained lay tutors. Session examples: • making an action plan • fatigue management • difficult emotions • regaining fitness • communication • working with healthcare professionals

13. New Perspectives Evaluation (n=186) Positive thinking and action planning rated most positively.

14. EPP - What has been Learnt? • Strong preference for disease-specific programmes. • Lay tutors valued, but some participants concerned about their medical expertise – need for co-tutor approach. • Problems with professional engagement – from ‘expert patient’ to ‘co-creating health’ – both are experts from different perspectives. • SMPs can fail if not integrated into routine care or current ways of self-managing – lack of continuity. • Cost-effectiveness of SMPs may underestimate savings – lay trainers also benefit.

16. 16 “The ultimate measure by which to judge the quality of medical effort is whether it helps patients as they see it” (Berwick, 1997).

17. References • Abraham C. Gardner B. (2009) What psychological and behaviour changes are initiated by ‘expert patient’ training and what training techniques are most helpful? Psychology and Health; 24; 10; 1153-1165. • Cardy P et al. (2006) Worried Sick: the emotional impact of cancer. Macmillan Cancer Support. • Cockle-Hearne and J. Faithfull S (2010) Self management for men surviving prostate cancer: a review of behavioural and psychosocial interventions to understand what strategies can work, for whom, and in what circumstances; Psycho-Oncology in press. • Coulter A. Ellins J. (2006) Patient centred interventions: a review of the evidence, Picker Institute Europe and The Health Foundation. • Doyle, C., L. H. Kushi, et al. (2006). "Nutrition and Physical Activity During and After Cancer Treatment: An American Cancer Society Guide for Informed Choices." CA Cancer J Clin 56(6): 323-353. • Epstein R.M. Street R. L. (2007) Patient-Centred Communication in Cancer Care, National Cancer Institute. • Foster C. et al. 2009) Self management of problems experienced following primary cancer treatment: an exploratory study, Unpublished report, University of Southampton, Macmillan Survivorship Research Group. • Jordan J.E. Osborne R.H.(2006) Chronic disease self management education programmes: challenges ahead; eMJA Rapid Online Publication, 15th Nov 2006.

18. References • Korstjens I et al. (2008) Quality of life after self management cancer rehabilitation: a randomised controlled trial comparing physical and cognitive behavioural training versus physical training. Psychosomatic Medicine, 70; 422-429. • Macmillian Cancer Support (2008). Two Million Reasons: The Cancer Survivorship Agenda. 2008. • Mandelblatt J.S. et al. (2008) Economic evaluation alongside a clinical trial of psycho-educational interventions to improve adjustment to survivorship among patients with breast cancer. J Clin Oncol, 26; 10; 1684-1690. • Powell R et al. (2009) Patient Partnership in Care: a new instrument for measuring patient-professional partnership in the treatment of long term conditions; Journal of Management and Marketing in Healthcare, 2, 4; 325-342. • Ruland C.M. et al. (2007) Designing tailored internet support to assist cancer patients in illness management; AMIA 2007 Symposium Proceedings, 635-639. • Stanton A.L. et al. (2005) Out comes from the Moving Beyond Cancer psycho-educational randomised controlled trial with breast cancer patients; J Clin Oncol 23; 6009-6018. • Yates P et al. (ongoing) Development of cancer survivor self management plans; Queensland University of Technology, http://www.hlth.qut.edu.au/nrs/research/researchprojects/cancersurvivorselfmanagementplans.jsp.