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Life after cancer treatment:
understanding problems & cocreating effective solutions
Claire Foster, PhD, CPsychol
Phil Cotterell, PhD, RMN, RGN
Deborah Fenlon, PhD, RGN
University of Southampton, UK
20th May 2009
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
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 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
Patient and carer co-researchers
Participating centres
Ninewells Hospital
Dundee
Belfast City Hospital
Belfast
Weston Park Hospital
Sheffield
Christie Hospital
Manchester
Leicester based support
group
St. Ann’s Hospice
Manchester
Middlesex UCL Hospital
London
Velindre Hospital
Cardiff
Guy’s & St. Thomas’ Hospital
London
Countess Mountbatten
House, Southampton
-
Participating Sites
Co-researcher Representation
Southampton General Hospital,
Southampton
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
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
Participants
• 105 patients, median 6 participants in each consultation group
• 1:5 patients approached participated
• 1:3 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
Rank
Theme
Total rank score
No groups (n=17)
1
Impact on life, how to live with cancer and related support issues
68
13
2
Risk factors and causes
58
12
3
Early detection and prevention
48
9
4
Research into general information needs (on cancer, treatment, research and
access to)
34
11
5
Use and effectiveness of complimentary and alternative therapies
30
7
6
General education of public about cancer
24
5
7
Research into different cancer and patient types
23
7
7
Research on treatment (curative treatment, treatment types and improvements)
23
5
7
Experiences and management of side effects
23
7
8
Organisation and Funding of Health and Social Care Services
21
6
9
Co-ordination, impact and funding of research
19
4
10
Research into recurrence
11
3
11
General communication issues involving all parties
10
3
12
Assessing patients’ views about cancer, services and research
9
2
13
Health and Safety in the hospital
1
1
Impact on life
• ‘Can there be research into the effect on the family of a
member being diagnosed with cancer?’
• ‘I’m 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 can’t get travel insurance…I feel very
cut off, I can’t work, I can’t drive, I can’t travel…life has
taken a completely different turn’
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
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 one’s 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 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 1993:11)
Research Evidence1
Focus of studies:
–
Strategies used to manage problems (symptoms) during treatment
–
Self help (CAM; support groups etc)
11%
•
Few UK studies (N=3).
•
Very little research following
Self
care/management:
symptoms,
prevention
Self help: CAM,
support groups,
information
89%
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.
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?
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)
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).
Findings 1
PROBLEMS EXPERIENCED FOLLOWING CANCER TREATMENT
•
Cancer experience problems
•
Dealing with people
–
Treatment ‘Everything just seemed like a
mountain to climb’
–
Loss of social contacts ‘You become like a
bit of a recluse’
–
Information ‘I was a bit left in the lurch
afterwards’
–
The challenge of interaction ‘You don’t
want to upset people around you’
–
Support ‘It’s like a security blanket has
been taken away’
•
Physical problems
–
Problems of function ‘I suffer from this
overwhelming tiredness’
–
Pain ‘Since I’ve finished my treatment I
have been in absolute
agony’
•
Dealing with emotions
‘I’ve cried…I’m frightened I’m going to die’
–
Emotional changes ‘You just feel kind of
left out at sea’
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 I’m wasting their time’
•
Family and friends
–
Supportive ‘He wasn’t a ‘new man’ but he is now’
–
Unsupportive ‘We have lost touch with some very, very
close friends’
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
‘It’s the financial side of it that’s 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’
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 time…it said
it’s 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
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 didn’t feel as though I needed to talk to anybody about it’
•
Psychological approaches
–
Making the best of it – ‘You’ve got to be thankful that
you’re alive’
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 – ‘(There’s) 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
‘shhh…get on with it’ and you talk yourself round’
Findings 3
SELF MANAGEMENT APPROACHES
•
Emotional approaches
–
Catharsis – ‘Shout at the devil’
•
Physical approaches
–
A changed appearance- ‘over the period of…three 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
morning…they are generally beneficial’
Findings 3
SELF MANAGEMENT APPROACHES
•
Making practical changes
–
‘Knowing you are going to die. I can prepare’
–
Financial management – ‘I’ve always struggled financially with money,
but now I sort of think ‘well you’ve 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 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)
Breast Cancer Work
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 5065
– 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 hour’s sleep was lost
Fenlon, Corner and Haviland (2008); European Journal of Cancer Care
‘It’s 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
that’s 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 response
• 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 week
• 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)
40
20
0
-20
-40
N=
44
52
relaxation
control
Outcomes
• Relaxation found to reduce incidence by 22% (p<0.001)
and 10% reduction in severity (p<0.01) of 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?
Pain today
Cancer
(n=247)
Non cancer
(n=274)
Sig (2-tailed) 95% CI
61.9%
49.4%
.00
-.21 to -.04
mean
mean
Pain at worst 5.7
in last 24 hrs
5.3
.19
-.19 to .92
Pain right
now
3.4
.006
.21 to 1.29
4.2
Nordic pain (site of pain in last 7 days)
Cancer
Non cancer
Sig (2-tailed)
Neck
68 (28%)
99 (37%)
.04*
Shoulder
92 (37%)
89 (33%)
.27
Elbow
36 (15%)
34 (13%).
.52
Hand
100 (41%)
84 (31%)
.02*
Upper back
50 (21%)
30 (11%)
.003*
Lower back
104 (43%)
120 (45%)
.66
Hips
77 (32%)
69 (26%)
.14
Knees
87 (36%)
92 (34%)
.71
Feet
77 (32%)
78 (29%)
.50
Pain affected activity in last 12 months
Cancer
Non cancer
Sig (2-tailed)
Neck
24 (10%)
29 (11%)
.88
Shoulder
39 (16%)
33 (12%)
.20
Elbow
13 (6%)
13 (5%).
.84
Hand
44 (19%)
30 (11%)
.02*
Upper back
24 (10%)
11 (4%)
.008*
Lower back
54 (23%)
59 (22%)
.91
Hips
43 (18%)
33 (12%)
.08
Knees
38 (16%)
36 (13%)
.45
Feet
37 (16%)
22 (8%)
.01*
“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 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.
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 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
Online support for self management?
The internet can be an important source of support for people
affected by cancer
We don’t 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 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?
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
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