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.
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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.
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Lynn Batehup March 2010 - National Cancer Survivorship Initiative