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Cancer survivorship and self
management a research programme:
Possibilities for collaboration
Macmillan Survivorship Research
Group
18th November 2009
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Claire Foster, PhD, CPsychol
• Head of Macmillan Survivorship
Research Group
• Health Psychologist
• Supporting self management of cancer survivors
• Exploring patterns of recovery following primary treatment
• Developing interventions to support self management
• Implications of genetic testing for cancer predisposition
• [email protected]
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Phil Cotterell, PhD, RGN
• Senior Research Fellow
• UK wide survey to assess self management
problems following primary cancer treatment
• Service user involvement in research
• Exploratory study of strategies people use to manage problems
experienced following cancer treatment
• [email protected]
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Deborah Fenlon, PhD, RGN
• Senior Research Fellow
• Areas of research:
– cohort study of recovery of wellbeing in
colorectal cancer survivors
– narrative interviews with cohort participants
– cohort study of joint pains in breast cancer
survivors
– the experiences and information needs of older
breast cancer survivors
• [email protected]
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Survey of cancer survivors
• 40% said life was affected ‘more than a little’ by cancer
• 53% harder dealing with emotional than physical needs
• 60% experienced problems in a close relationship
• 32% reported job disruptions or loss
• 72% reported depression at some point in their recovery
• 70% felt their physician had been unable to help with their non medical
needs
(Lent 2007)
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Macmillan Survivorship Research Group
• Understanding recovery and self management following
primary treatment
• Co-creating and testing interventions to support self
management
• User involvement and including those typically
underrepresented.
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1.Problematic
event (cancer
type, stage and
treatment)
5. Personality and affective
dispositions
2. Coping
appraisal and
strategies
4.Environmental
supports and
resources
6. Problem
resolution
7. Restoration of
health and
wellbeing
3. Problem
related coping
efficacy
Model of restorative well-being in cancer survivorship
(Adapted from Lent, 2007)
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Our programme of research
– Cohort of colorectal cancer survivors
– Survey of self management of problems following
radiotherapy/chemotherapy
– Online intervention to support self management of
problems experienced by cancer survivors
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Cohort study: Colorectal cancer
Aims
•
Explore restoration of health and well-being following primary treatment
•
Identify who is at risk of problems
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Explore factors which hinder/enhance restoration of health and well-being
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Make recommendations for where interventions/services should be targeted to
support survivors
Design
•
720 people (pre-surgery up to two years post treatment)
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Questionnaires and narrative interviews
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Five times over 2 years and then find funding for long term follow up.
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Measure of health and wellbeing
• QLACS [Avis et al., 2005] measures 12 domains of cancer
survivorship;
– 7 generic domains (pain, fatigue, positive and negative
feelings, cognitive and sexual problems, social
avoidance) and
– 5 cancer specific domains (financial problems, family
distress, recurrence distress, appearance concerns,
benefits from cancer)
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Factors which may affect recovery of health and
well-being
• Cancer type and stage
• Socio-demographic details (age, gender, ethnicity,
educational attainment, marital status, and socioeconomic
status etc)
• Individual characteristics (style of coping, social support,
self esteem, confidence to manage problems etc)
• Environmental supports and resources
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Measures
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Coping Orientation to Problems Experienced (Carver, 1989) assesses how
individuals manage stressful life events.
•
Ways of Coping Questionnaire (Folkman & Lazarus, 1985) assesses
thoughts/acts used to deal with stressful encounters.
•
Illness Perception Questionnaire – Revised (Moss-Morris et al., 2002) assesses
beliefs about illness.
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Monitoring and Blunting Style Scale (Miller, 1987) assesses ways people deal
with stressful life events.
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Life Orientation Test-Revised (Scheier & Carver, 1985) assesses generalised
expectancies for positive versus negative outcomes.
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Rosenberg Self-Esteem Scale (Rosenberg, 1965)
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Self-Efficacy for Managing Chronic Disease (Lorig et al., 2001)
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Environmental supports and resources:
• Access to/utilisation of health, social care and other
supports; residential/neighbourhood quality: We will work
with expert advisors[1] and Steering/User Reference
Groups to generate study specific questions.
• Some items from the OARS Multidimensional Functional
Assessment Questionnaire (Fillenbaum 1988) will be
piloted e.g. for service use and support.
• MOS social support survey (Sherbourne & Stewart, 1991)
measures social networks and support.
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Survey of self management post treatment
Aims
• Assess the range of problems experienced following
completion of primary radiotherapy/chemotherapy.
• Identify how these problems are self managed.
• Identify factors associated with self management of
problems.
• Identify factors that hinder self management of problems.
• Identify resources required to enhance self management.
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Survey
• We will recruit people as they complete their primary
radiotherapy/chemotherapy
• We aim to recruit 1020 people from 5 cancer centres in the
UK, including breast, prostate, colorectal and less common
cancers.
• We will repeat the survey with the same participants at
three time points over one year.
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Online intervention to support survivors
Aims
• Develop an online resource, bringing together clinical and
lay expertise, offering tailored self management support
following primary treatment
• Test the value of the intervention in increasing self efficacy
to self-manage cancer related problems following primary
treatment
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Service user involvement
• Definition
– We use the term ‘service user’ to mean people affected by
cancer including patients, their carers, families and friends.
• Why involve service users?
– Increase relevance & reliability of research; Increase access
to participants & recruitment to studies; Collect more useful
information; More ethical; Changing expectations; Policy &
practice developments.
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Service user involvement
• Aims
1. Further develop and integrate the involvement of people
affected by cancer in our research activities strategically
and at the level of research practice.
2. Broaden the range of people affected by cancer we work
with.
3. Offer a variety of involvement opportunities.
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Service user involvement
• Project level
― For each research project we will establish a Steering Group
(including two research partners/service users) and a User
Reference Group (chaired by a service user and attended by
members of the research team involved in the project).
• Strategic level
― We will form a Service User Research Advisory Group
[SURAG] which will take a strategic view of our entire
research programme.
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Service user involvement
• Mechanisms of involvement e.g. virtually via phone/email
conversations, and newsletters or via outreach work, and
face to face individual and/or group meetings.
• We are working to find innovative ways to include groups
typically under represented in research e.g. older people,
those with low literacy, low socio-economic status, black
and minority ethnic groups, and those in remote areas.
• Building on experience e.g. The Listening Study; Exploring
Research Experiences of Patients from BME Communities
Study; Exploring Breast Cancer Experiences of Older
Women Study.
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Outputs
• Map recovery of health and well being after cancer
• Find out what helps/hinders recovery
• Gather a large database on ways people use to manage their
problems
• Develop an internet based intervention based on this
knowledge
• Develop and test a variety of interventions with other
researchers based on the knowledge gathered.
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Questions
• Measures
– Are these the right/important ones?
– Are they being used by other groups?
• Underrepresented groups
– Who are they?
– How do we ensure we reach them?
• Are there particular questions we should be asking about
carers/relatives?
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Discussion points
• What might the areas for collaborative work be?
• Are there new pieces of work which could be undertaken jointly with
other WUN partners which would enhance the programmes of both
universities?
• Are there pieces of work which have been conducted by WUN partners
which would be useful to replicate in the UK?
• Are there pieces of work which have been conducted by Southampton
which would be useful to replicate by other WUN partners?
• Are there on-line interventions that are being developed that could be
carried out jointly?
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Macmillan Survivorship Research Group
Lisa Bryan, Research Group Secretary
School of Health Sciences, University Rd, Highfield,
University of Southampton, UK
+44 (0)2380 596885
http://www.soton.ac.uk/mru/
Email: [email protected]