National Cancer Survivorship Initiative Supported Self-Management Workstream

1. National Cancer Survivorship InitiativeSupported Self-Management Workstream Lynn Batehup Nicola Davies Self-Management workstream 9th March, 2010

2. Self-Management and Cancer • Having an active role in managing a long-term condition can empower people to act for themselves – increase their confidence in their ability to manage problems associated with their condition (Coulter and Ellins, 2006) • 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.

3. Self-Management and Cancer • “People have different dispositions, supports and resources, resulting in individual differences in recovery and restoration of health and well-being, self-management activity, and the need for self-management support.” Foster et al. (2009) Self-management of problems experienced following primary cancer treatment: an exploratory study.

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

5. Support for Self Management: • “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’ • Adapted from ‘Co-Creating Health’ • The Health Foundation 2008

6. NCSI Vision 2009: Three ‘Enablers’ • Skills development programmes for professionals • Self management support options for patients/survivors • Institutional support for service redesign

7. Support for Self-Management – what is the Evidence? – Fundamental Culture Change • A relationship with health professionals which is based on partnership is fundamental – both patient and professional are experts from their different perspectives.(Powell et al 2009; Epstein & Street 2007)

8. Evidence – Who Benefits? Personalised assessment and care plan (Yates et al ongoing; Ruland et al 2007) Risk stratification – ‘high risk’ groups (e.g. Co-morbidities; ethnic minorities) Tailored information that enhances knowledge – health literacy(Jordan&Osborne 2006) EVERYBODY benefits from A partnership relationship with their health professionals which enables self management

9. Evidence of Benefits

10. Evidence - What Works?

12. Health care as individual as you East Surrey CareCall is a servicedesigned to help you manage your health.Set up in response to local patient views, CareCall is a free service offering you:-• Your own personal Health Coach who is a specially trained Registered Nurse.• Information about health issues that are important to you.• Better control of your own healthcare.• The opportunity to discuss treatment plans and options.CareCall works along side your GP practice and other community services – it does not replace your contact with them. How do I access the Service?Participation in CareCall is your choice. You can call a Health Coach between the hours of 7am and 11pm Monday to Friday and on Saturday 9am to 1pm through a freephone number 0800 028 4207. CareCall is part of Surrey Primary Care Trust

13. Outcomes: what are the important ones?

14. References 1 (not in alpha order) • 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. • 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 • Epstein R.M. Street R. L.(2007) Patient-Centred Communication in Cancer Care, National Cancer Institute • 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/cancersurvivorself-managementplans.jsp

15. References 2 • Ruland C.M. et al(2007) Designing tailored internet support to assist cancer patients in illness management; AMIA 2007 Symposium Proceedings, 635-639 • Jordan J.E. Osborne R.H.(2006) Chronic disease self management education programmes: challenges ahead; eMJA Rapid Online Publication, 15th Nov 2006 • ~Cockle-Hearne 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 • 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

16. References 3 • Coulter A. Ellins J.(2006) Patient centred interventions: a review of the evidence, Picker Institute Europe and The Health Foundation. • 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 • 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 • 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