National Cancer Survivorship Initiative Supported Self-Management Workstream Lynn Batehup Nicola Davies Network Development Programme Event 18th and 19th March, 2010 Aims: 1. Clarify self-management and self-management support 2. Rationale for supported self-management 3. What is the evidence and who benefits? 4. Focus on outcomes 2 Self-Management and Cancer 3 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 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 Self-Management Support: what is the rationale? The majority (79%) of adults with a LTC (including cancer) are comfortable taking responsibility for their condition - self-management is the ‘default’ position for the majority of cancer survivors. Cancer survivors have a profile similar to other chronic conditions in respect of general health problems – 4/5 times as likely to have general health problems up to 5-years after treatment (compared to the general population). Cancer survivors have similar levels of all health service use as people with other LTCs. Lifestyle factors (e.g. weight; diet; physical activity) are increasingly significant elements of secondary prevention for cancer recurrence and survival. 35% of cancer survivors are not aware of the importance of a healthy lifestyle. 33% did not have all the information. 42% do not have the support needed to make decisions about their lifestyle. Cancer survivors report higher levels of engagement and ‘activation’ with their health and healthcare than people with LTCs. NCSI Mapping Project – self-management support was a cross-cutting theme – a need for cancer survivors and an area requiring further research. 5 WHERE IS THE EVIDENCE? 6 1. Self Care Support: The Evidence Pack. Summary of work in Progress (2005-07). Department of Health. 2. Supporting self-management of people affected by cancer (2005). Foster C. Hopkinson J. Hill H. Wright D. Macmillan Research Unit, University of Southampton. 3. Patient–focused interventions. A Review of the Evidence. Angela Coulter Jo Ellins, Picker Institute and The Health Foundation. 2006. 4. Self-management programmes for cancer survivors: a structured review of outcome measures (2009). Self-Management Workstream NCSI/Macmillan Cancer Support. Nicola Davies. 5. Self-management support: a review of the evidence (2009). Deborah Fenlon and Claire Foster. Macmillan Research Unit for the Self Management Workstream. 6. 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. 7. 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. Evidence – Who Benefits? Self-management support is more than courses! Personalised assessment and management plan. Tailored information that enhances knowledge. Risk stratification – tailoring of support to need. A partnership relationship with their health professionals which enables self-management. 7 Evidence of Benefits Self-management programmes which target specific problems/symptoms. 8 Self-management programmes supporting adjustment to survivorship: Based on assessment of need and risk: - Low support and low confidence - Low HQoL - Lack of preparedness - Health literacy Evidence of benefit for some Telephone-delivered support. Based on assessment of need and risk: - Older survivors with mobility problems - Prostate cancer survivors with problems of a sensitive nature Referral to organised cancer support groups/peer survivors – sharing and learning from the experience of other cancer survivors. Evidence of Benefits What Works? 9 Evidence Clinician training for supporting self-management during the consultation. Coulter & Ellins, 2007; Powell et al., 2009; Epstein & Street, 2006. ‘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 -goal review - CBT techniques - consider length Abraham and Gardner, 2009; Coulter & Ellins, 2007. Lifestyle behaviour change requires ongoing support and coaching. Coulter & Ellins, 2007; DoH 2008 Self-help resources such as videos/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. Emerging Evidence: The Internet The internet as a self-management resource – seek information, share experiences, support others (Foster and Roffe, 2009). Web-based technology can allow patients/survivors to ‘tailor’ their own self-management support (Ruland et al., 2007; NyhofYoung et al., 2006). Online programmes can prove to be interactive, convenient and cost-effective (Lorig, 2010; ongoing). 10 Expert Patient Programme - UK 11 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. 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 12 New Perspectives Evaluation (n=186) 13 Positive thinking and action planning rated most positively. EPP - What has been Learnt? 14 • 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. 15 Measuring SMP Outcomes: The Rationale NCSI Vision ‘key shift’ - new emphasis on routine measurement of outcomes from the patient perspective. Most SMPs are based on a theoretical framework – expected outcomes can be measured to evaluate the effectiveness of the SMP. Evaluate the short and long-term efficacy of interventions/services. Screening and risk stratification – efficient allocation of resources – based on need and likely benefit. Rigorous comparisons of different delivery methods. 16 What are the Important Outcomes? Based on theoretical framework and desired outcomes. Four key stakeholders: patient; clinician’ commissioners; policy. Self-efficacy is a key outcome – linked to initiation and maintenance of self-management. Symptom-specific outcomes – reduced symptoms; reduced distress; adaptive coping. Skills acquisition – the skills to self-manage. Healthcare utilisation – confidence to communicate with clinician. Quality of life. Cost-effectiveness of SMP. “The ultimate measure by which to judge the quality of medical effort is whether it helps patients as they see it” (Berwick, 1997). References 17 • 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. References 18 • 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 patientprofessional 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.