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Life after cancer treatment: understanding problems


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Title: Life after cancer treatment: understanding problems

Life after cancer treatment understanding
problems co-creating effective solutions
  • Claire Foster, PhD, CPsychol
  • Phil Cotterell, PhD, RMN, RGN
  • Deborah Fenlon, PhD, RGN
  • University of Southampton, UK

20th May 2009
  • Understanding problems
  • Macmillan Listening Study
  • Macmillan Life After Cancer Treatment study
  • Breast cancer work (hot flushes joint aches and
  • Co-creating effective solutions
  • Overview of future plans joint aches and pains
  • Overview of future plans online intervention
  • Discussion

Macmillan Listening Study
Study aims
  • Explore perceptions of cancer research of people
    affected by the disease
  • Determine the priorities for research of people
    with cancer
  • Provide a mechanism by which people with cancer
    can influence the direction of cancer research

Study design
  • Participatory research active involvement of
    all stakeholders
  • Research design determined by people affected by
    cancer through a stakeholder consultation,
    convening expert patient forum
  • Approach using focus group methodology
  • Exploratory pilot work to determine
    appropriateness of use of focus groups and to
    determine tasks for groups
  • Recruitment of participants and data collection
    led by people affected by cancer
  • Tailor made, parallel studies with hard to reach

The process
  • Consultation groups representative of UK cancer
  • 12 consultation groups conducted in 7 cancer
    centres in all 4 UK nations
  • Sample stratified by gender, stage of treatment,
    cancer site and demographic characteristics
  • Engagement with people from diverse communities
  • 2 groups with patients with advanced cancer from
    hospice day care services in north and south of
  • 2 with South Asian patients conducted in English,
    Hindi and Gujarati
  • 1 with people over the age of 75yrs

Patient and carer co-researchers
Participating centres
Consultation groups process
  • Participants discussed involvement in and
    knowledge of research and perceptions of cancer
  • Research topics written on post-it notes
  • Topics grouped into themes by participants
  • Votes cast
  • Priorities read to group and discussed
  • Evaluation questionnaire

  • Conducted independently by 3 members of research
    team and 5 co-researchers
  • Themes identified in consultation groups and
    transcripts examined to develop list of agreed
    research themes for each group
  • Ranked list of research themes for 17 groups
    combined using ranked scores
  • 15 research themes identified

  • 105 patients, median 6 participants in each
    consultation group
  • 15 patients approached participated
  • 13 participants male
  • Age ranged from 30 over 80 years
  • 12 (11) participants of Afro-Caribbean or South
    Asian origin
  • 25 undergoing active treatment, remainder
    completed active treatment, or in palliative
    stage of illness

Priority themes from consultation groups
Impact on life
  • Can there be research into the effect on the
    family of a member being diagnosed with cancer?
  • Im not happy with being told to eat healthily.
    I want to know what I can do in addition, how do
    I eat healthily?
  • I love to travel and I cant get travel
    insuranceI feel very cut off, I cant work, I
    cant drive, I cant travellife has taken a
    completely different turn

  • Experience of participating positive
  • High priority concerns did not differ markedly
    across groups
  • There is a mismatch between current UK research
    portfolio for cancer and the priorities of
  • A greater understanding of cancer science among
    the public is needed
  • The top research priorities for people with
    cancer are the consequences of living with
    cancer, risk factors and causes of cancer and
    early detection and prevention

Exploring strategies people use to manage
problems experienced following cancer treatment
Background to study
  • Top research priority support with every day
    problems associated with cancer and its treatment
    Macmillan Listening Study, 2006
  • Importance of informative resources to help live
    with every day problems Bingley et al., 2006
  • Having an active role in managing ones own
    health related problems can be empowering,
    improve quality of life and may have physical
    benefit Barlow et al., 2003

Self Management is
  • Engaging in activities that protect and promote
  • Monitoring and managing the symptoms and signs of
  • Managing the impact of illness on functioning,
    emotions and interpersonal relationships,
  • Adhering to treatment, (Von Korff et al,1997).
  • Making informed choices,
  • Communicating effectively with health care
  • To adapt new perspectives and generic skills
    that can be applied to new problems as they
    arise.. AND to practise new health behaviours,
    and to maintain or regain emotional stability.
    (Lorig et al 199311)

Research Evidence1
  • Focus of studies
  • Strategies used to manage problems (symptoms)
    during treatment
  • Self help (CAM support groups etc)
  • Few UK studies (N3).
  • Very little research following
  • treatment.

1 Foster C, Hopkinson J, Hill H, Wright D.
Supporting self management of people affected by
cancer A review of the evidence. 2005.
Macmillan Cancer Relief University of
The study
  • Aim
  • To gather accounts of how patients self manage
    problems arising from cancer and cancer treatment
  • Research Questions
  • What problems associated with cancer and its
    treatment are experienced (physical,
    psycho-social and practical) following treatment
    for primary cancer, as perceived by people who
    have recently completed treatment?
  • How do people manage these problems (themselves
    strategies used)?
  • What (if anything) is important about self
    managing these problems?
  • What resources might be of benefit in self
    managing problems from
    the patients perspective?

  • Local advertising to recruit people who had
    completed treatment for primary cancer in the
    past 6-12 months
  • University ethical approval
  • Face to face interviews
  • Thematic analysis of interview transcripts
    utilising the framework approach (Ritchie et
    al, 2003)

  • 31 participants 24 women and 7 men
  • 20 participants in the 50-69 age category 5 in
    the 30-49 and 1 in the 70-79 age category
  • Cancer types - breast cancer (15) colon (bowel)
    (5) ovarian (3). Other cancers reported were
    prostate, leukaemia, rectal, pancreatic,
    cervical, and brain cancer. Three participants
    had metastasis indicating more advanced disease.
  • Treatments - chemotherapy, radiotherapy and
    surgery. Most were also in receipt of regular
    follow up regarding their cancer.
  • Majority had no support group experience at all

Findings 1
  • Cancer experience problems
  • Treatment Everything just seemed like a mountain
    to climb
  • Information I was a bit left in the lurch
  • Support Its like a security blanket has been
    taken away
  • Dealing with emotions
  • Ive criedIm frightened Im going to die
  • Emotional changes You just feel kind of left out
    at sea
  • Dealing with people
  • Loss of social contacts You become like a bit of
    a recluse
  • The challenge of interaction You dont want to
    upset people around you
  • Physical problems
  • Problems of function I suffer from this
    overwhelming tiredness
  • Pain Since Ive finished my treatment I have
    been in absolute agony

Findings 2
  • Healthcare professionals
  • Supportive healthcare professionals I found the
    support from the breast care sisters and the
    district nurses were marvellous
  • Unsupportive healthcare professionals I feel
    that Im wasting their time
  • Family and friends
  • Supportive He wasnt a new man but he is now
  • Unsupportive We have lost touch with some very,
    very close friends

Findings 2
  • Accessing appropriate information
  • Information exchange with other people affected
    by cancer I would like to speak to somebody that
    actually had cervical cancer
  • Financial and work related issues
  • Its the financial side of it thats the worst
    part of it in a way
  • I feel my work did not understand at all
  • Organised support
  • You can actually see that there was a light at
    the end of the

Findings 3
  • Being proactive
  • I do go on the internet regularly just to have a
    look see what new things have come out
  • Picking up the leaflet on my Tamoxifen and that
    is the first timeit said its the calcium going
    round can make you ache, well that was the first
    time I knew that and I like to know why things
    are happening to me
  • Social approaches
  • Connecting with others The more you can talk
    about it the
    better it is

Findings 3
  • Social approaches
  • Sharing knowledge A lady the other day...said
    is there any advice you
    can give me and I said several things
  • Making changes and planning for the future My
    life changed dramatically
  • I didnt feel as though I needed to talk to
    anybody about it
  • Psychological approaches
  • Making the best of it Youve got to be
    thankful that youre

Findings 3
  • Psychological approaches
  • Being strong and positive I am not going to
    just sit at home feeling sorry for myself
  • Avoidance I used to pretend everything was OK
  • Getting back to normal (Theres) a drive there
    to get yourself back to normality and get on with
    your life
  • Emotional approaches
  • I used to sit and cry to myself time after time
    and say shhhget on with it
    and you talk yourself round

Findings 3
  • Emotional approaches
  • Catharsis Shout at the devil
  • Physical approaches
  • A changed appearance- over the period ofthree
    months, I was practically back to the size I was
  • A changing body I take my time more
  • Regaining strength I do my exercises night and
    morningthey are generally

Findings 3
  • Making practical changes
  • Knowing you are going to die. I can prepare
  • Financial management Ive always struggled
    financially with money, but now I sort of think
    well youve only got one go at it.
  • Practical adjustments The policy, because the
    main side effect was fatigue, was just do one
    thing a day

Key points
  • Wide range of problems experienced following
    cancer treatment (physical, psychosocial and
  • Healthcare professionals, family and friends can
    be both supportive and unsupportive in terms of
    self management assistance
  • Those who struggled to access helpful support and
    advice had more difficulties to live well with
  • There is a need for information (e.g. peer
    knowledge) as well as finance, work, and support
    advice to support self management
  • Wide range of self management approaches
    undertaken (physical, psychosocial and practical)

Breast Cancer Work
Breast Cancer and Menopause
  • My work as clinical nurse specialist in breast
  • 70 with menopausal difficulties (Canney and
    Hatton, 1994)
  • Why so many?
  • Breast cancer incidence rises from age of 50,
    majority between 50-65
  • Average age of menopause is 51
  • Menopause and breast cancer may overlap
  • Breast cancer treatments may cause menopause or
    menopausal symptoms.

Menopausal problems after breast cancer
  • joint pain - 77
  • feeling tired - 75
  • difficulty sleeping - 68
  • hot flushes - 66
  • headaches - 55
  • irritable and nervous - 54
  • depressed - 51
  • (Carpenter and Andrykowski, 1999)

Hot flushes how bad is it?
  • 72 women recorded disturbed nights
  • Half of all nights on record were disturbed
  • Sleep lost could be less than 15 minutes or over
    6 hours
  • In 38 of nights disturbed, over one hours sleep
    was lost
  • Fenlon, Corner and Haviland (2008) European
    Journal of Cancer Care

  • Its as though somebody has built a furnace
    inside of you and it's your whole body. It
    starts almost at your feet and works up and you
    just feel as though you are literally on fire
  • it just goes on and on and on and on. It can
    last five, 10 minutes, 15 minutes I've had them
    gone on sort of incessantly for about three
  • To me it felt like probably like a child wetting
    the bed very distressing, and, and in the
    morning I would really feel terribly upset, and,
    and thats something when you are so out, so out
    of control.
  • Fenlon and Rogers (2008) Cancer Nursing

What causes flushes?
  • Appear to be an over sensitivity in the normal
    hyperthermic response (i.e. sweating and flushing
    in order to reduce body temperature) linked to
    reduced levels of oestrogen.
  • Most people have a tolerance of about 0.4C in
    core body temp before hyper or hypothermic
  • Post menopause this is reduced to 0C, so flushing
    easily induced by small triggers.

Relaxation therapy evidence base
  • Connection between stress and incidence (Gannon
    et al, 1987 and Swartzman, 1990)
  • Reduction in incidence in those women without
    breast cancer (Hunter and Liao, 1996 Freedman
    and Woodward, 1992)
  • Pilot work showed 30 reduction (Fenlon, 1999)

Relaxation trial
  • RCT of 150 women with hot flushes after breast
    cancer randomised to relaxation vs control
  • Fenlon, Corner and Haviland (2008) Journal of
    Pain and Symptom Management

Trial design
  • Randomised to treat/ no treat
  • Fill in questionnaires and keep diary for one
  • Be taught technique
  • Practice daily for one month
  • Repeat questionnaires and diary
  • Repeat questionnaires and diary at 3 months

Relaxation training
  • Single session with OT
  • pragmatics of integrating into practice
  • Deep breathing techniques with guided imagery
  • Tape provided for daily use at home
  • To increase control for individual and encourage
    to build into daily lifestyle
  • Written instructions re stress management and
    relaxation techniques

Change in number of flushes per week after one
month (median and interquartile range)
  • Relaxation found to reduce incidence by 22
    (pof hot flushes
  • Incidence before relaxation was 33 per week,
    which reduced by a median of 7 per week.
  • Severity before relaxation was 4.7 per week,
    which reduced by a median of 0.47 per week.
  • Fenlon, Corner and Haviland (2008) Journal of
    Pain and Symptom Management

Case control, cross-sectional survey of joint and
muscle aches, pains and stiffness in women with
primary breast cancer
Study design
  • Cross-sectional survey
  • 247 women in breast cancer follow up clinic (70
    response rate)
  • Case controlled
  • 272 women of similar age attending benign breast
    clinics or for screening

Outcome measures
  • Nordic musculoskeletal pain
  • Brief Pain Inventory
  • SF-36
  • Demographic and treatment details
  • Questionnaire on explanatory factors for pain

Have you had pain today?
Nordic pain (site of pain in last 7 days)
Pain affected activity in last 12 months
  • yes, in the first 2 years they interfered with
    my life to the point where my discomfort
    dominated my day to day activities and dragged my
    mood down
  • Joints and muscles were stiff and achy on
    walking. Often had a warm bath to keep me going.
    Had to lift my legs in and out of car

Future work co-creating effective solutions
Developing our programme
  • Co-create effective solutions to support self
    management of these problems in partnership with
    service users, Macmillan partners, clinical
    partners and academic experts
  • Develop effective ways to enable the involvement
    of people typically under-represented in research

User involvement
  • We work with service users to inform our
    programme of research (Knowledge Café) future
  • We ask service users what they want researched
  • We have User Reference Groups for our projects to
    direct the way the research is conducted
  • We have service users on all our project Advisory
  • Find ways to access under represented groups
  • Working with users to feed back the findings
    into practice.

Joint Aches Cohort Study (JACS)
  • Cohort study to explore natural history (onset,
    duration etc) and establish causes of joint and
    muscle aches, pains and stiffness (funded by
    Breast Cancer Campaign)
  • 450 women with breast cancer to follow up at 5
    time points over 1-2 years.
  • Compare with 50 women with DCIS

Future work
  • Qualitative analysis of experience (not yet
  • Identify and test interventions
  • Systematic review of non-pharmacological
    interventions for non cancer arthralgia (funded
    by CECo)
  • Possibility of testing Tai Chi, glucosamine, OT

Online support for self management?
  • The internet can be an important source of
    support for people affected by cancer
  • We dont yet know whether an online self
    management support intervention (beyond an online
    support group) can benefit survivors

Development and testing of an online resource
offering tailored, lay generated self management
  • Can an online intervention offering tailored lay
    generated examples of self management of cancer
    related problems be of benefit to people
    following primary treatment?
  • Can self management be supported by such an
    online resource?
  • What are the cost implications of such an

What the online resource would offer
  • Tailored lay generated examples of self
    management for people living with everyday
    problems following primary cancer treatment
  • Can be tailored for individuals with very
    different experiences following cancer treatment
    e.g. in remission, long term problems, advanced
  • Can be tailored for individuals with low
    literacy, low health literacy
  • Can be offered in different languages
  • May include signposting to existing resources for
    cancer survivors their relatives

  • Understand problems, experiences, health care
    support needs following primary cancer treatment
  • Develop test innovative e-solutions
  • Improve the lives of people living with beyond