Life after cancer treatment: understanding problems

1
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
2
Introduction

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

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Macmillan Listening Study
4
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

5
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

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The process

• Consultation groups representative of UK cancer
  population
• 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
  England
• 2 with South Asian patients conducted in English,
  Hindi and Gujarati
• 1 with people over the age of 75yrs

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Patient and carer co-researchers
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Participating centres
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Consultation groups process

• Participants discussed involvement in and
  knowledge of research and perceptions of cancer
  research
• Research topics written on post-it notes
• Topics grouped into themes by participants
• Votes cast
• Priorities read to group and discussed
• Evaluation questionnaire

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Analysis

• 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

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Participants

• 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

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Priority themes from consultation groups
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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

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Conclusions

• 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
  patients
• 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

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Exploring strategies people use to manage
problems experienced following cancer treatment
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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

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Self Management is

• Engaging in activities that protect and promote
  health,
• Monitoring and managing the symptoms and signs of
  illness,
• 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
  professionals,
• 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)

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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
Southampton.
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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?

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Methods

• 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)

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Participants

• 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
  (27).

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Findings 1

• PROBLEMS EXPERIENCED FOLLOWING CANCER TREATMENT

• Cancer experience problems
• Treatment Everything just seemed like a mountain
  to climb
• Information I was a bit left in the lurch
  afterwards
• 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

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Findings 2

• SELF MANAGEMENT SUPPORTIVE/UNSUPPORTIVE FACTORS
• 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

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Findings 2

• SELF MANAGEMENT SUPPORTIVE/UNSUPPORTIVE FACTORS
• 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
  tunnel

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Findings 3

• SELF MANAGEMENT APPROACHES
• 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

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Findings 3

• SELF MANAGEMENT APPROACHES
• 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
  alive

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Findings 3

• SELF MANAGEMENT APPROACHES
• 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

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Findings 3

• SELF MANAGEMENT APPROACHES
• 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
  originally
• A changing body I take my time more
• Regaining strength I do my exercises night and
  morningthey are generally
  beneficial

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Findings 3

• SELF MANAGEMENT APPROACHES
• 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

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Key points

• Wide range of problems experienced following
  cancer treatment (physical, psychosocial and
  practical)
• 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
  cancer
• 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)

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Breast Cancer Work
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Breast Cancer and Menopause

• My work as clinical nurse specialist in breast
  cancer
• 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.

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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)

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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

35

• 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
  inside
• 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
  hours.
• 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

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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
  response
• Post menopause this is reduced to 0C, so flushing
  easily induced by small triggers.

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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)

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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

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Trial design

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

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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

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Change in number of flushes per week after one
month (median and interquartile range)
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Outcomes

• 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

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Case control, cross-sectional survey of joint and
muscle aches, pains and stiffness in women with
primary breast cancer
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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

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Outcome measures

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

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Have you had pain today?
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Nordic pain (site of pain in last 7 days)
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Pain affected activity in last 12 months
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• 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

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Future work co-creating effective solutions
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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

52
User involvement

• We work with service users to inform our
  programme of research (Knowledge Café) future
  group
• 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
  Groups
• Find ways to access under represented groups
• Working with users to feed back the findings
  into practice.

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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

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Future work

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

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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

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Development and testing of an online resource
offering tailored, lay generated self management
support

• 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
  approach?

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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
  cancer
• 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

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