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National Cancer Survivorship Initiative Supported SelfManagement Workstream Lynn Batehup Nicola Davies Self-Management workstream 9th March, 2010 Self-Management and Cancer 2 • 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. Self-Management and Cancer 3 • “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 Sources of Self Management Support Abandonment Healthcare workers Lack of information Families & friends Lack of support Accessing information Emotional difficulties Networking with other cancer survivors Social/relationship difficulties Work & finance Physical/functional changes Organised support External Resources 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 Personal Resources Problem Resolution LIVE WELL AFTER CANCER 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 5 NCSI Vision 2009: Three ‘Enablers’ • Skills development programmes for professionals • Self management support options for patients/survivors • Institutional support for service redesign 6 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) 7 Evidence – Who Benefits? 8 Personalised assessment and care plan (Yates et al ongoing; Ruland et al 2007) Risk stratification – ‘high risk’ groups (e.g. Comorbidities; ethnic minorities) Tailored information that enhances knowledge – health literacy(Jordan &Osborne 2006) A partnership relationship with their health professionals which enables self management 9 Evidence of Benefits Self-management programmes which target specific problems/symptoms, and for specific cancer types (CockleHearne and Faithful, 2009; May et al., 2009) Self-management programmes supporting adjustment to survivorship: Based on assessment of need and risk: - Low support and low confidence - Lack of preparedness(Stanton et al., 2007) - Health literacy Evidence of some benefit Having to undertake challenging lifestyle behaviour change – obesity; physical activity; smoking cessation; on patient-triggered aftercare Referral to organised cancer support groups/peer survivors – sharing and learning from the experience of other cancer survivors Evidence - What Works? What Works? 10 Evidence Clinician training for supporting self-management during the consultation. Coulter and Ellins, 2007; Powell et al 2009; Epstein&Street 2007) ‘Intensive’ adjustment-focused self-management programmes targeted at ‘high risk’ survivors. Cockle-Hearn and Faithful, 2010). Design of programmes should have a theoretical basis to the design: -information provision -problem solving -modelling -personal goal setting -practice -social comparison -reporting back -goal review - CBT techniques - consider length (Abraham and Gardner, 2009) Coulter & Ellins 2007 Lifestyle behaviour change requires ongoing support and coaching. Coulter & Ellins, 2007;Korstjens 200 Self-help resources such as video/DVDs can be effective/costeffective if designed to incorporate self-efficacy(peer modelling) (Mandelblatt et al., 2008) Self-management interventions can have cost advantages over conventional care. (Mandelblatt et al., 2008) 11 12 Health care as individual as you East Surrey CareCall is a service designed 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. CareCall is part of Surrey Primary Care Trust 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 . 13 Outcomes: what are the important ones? Patient Clinician Commissioners Policy Personalised care Patient in partnership communication skills. Meeting national targets. Establishment of patient-centred care. Health literacy Confidence to selfmanage. Self-management skills development. Reduced symptom burden. Improved quality of life. Satisfaction with service. Improved healthcare utilisation reduction in missed appointments. Service improvement. quality Cost-effectiveness. Reduced costs of treatment. Secondary prevention. Innovation Earlier diagnosis. More clinic time. Multidisciplinary team work. Improvements in cancer care to match those established in the best European countries. 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/cancersurvivorselfmanagementplans.jsp 14 References 2 • 15 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 psychoeducational randomised controlled trial with breast cancer patients; J Clin Oncol 23; 6009-6018 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 psychoeducational interventions to improve adjustment to survivorship among patients with breast cancer. J Clin Oncol, 26; 10; 1684-1690 16