Cancer survivorship and self management a research programme: Possibilities for collaboration Macmil

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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
• C.L.Foster_at_soton.ac.uk

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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
• p.cotterell_at_soton.ac.uk

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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
• dfenlon_at_soton.ac.uk

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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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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
• Explore factors which hinder/enhance restoration
  of health and well-being
• Make recommendations for where interventions/servi
  ces should be targeted to support survivors
• Design
• 720 people (pre-surgery up to two years post
  treatment)
• Questionnaires and narrative interviews
• 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

• 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.
• Monitoring and Blunting Style Scale (Miller,
  1987) assesses ways people deal with stressful
  life events.
• Life Orientation Test-Revised (Scheier Carver,
  1985) assesses generalised expectancies for
  positive versus negative outcomes.
• Rosenberg Self-Esteem Scale (Rosenberg, 1965)
• 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 advisors1 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
• Further develop and integrate the involvement of
  people affected by cancer in our research
  activities strategically and at the level of
  research practice.
• Broaden the range of people affected by cancer we
  work with.
• 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 mrusoton_at_soton.ac.uk