Key findings from a longitudinal service evaluation of Penny Brohn Cancer Care's 'Living Well with the Impact of Cancer' courses. Dr Helen Seers, Research and Information Manager, Penny Brohn Cancer Care Dr Marie Polley, Senior Lecturer in Health Sciences and Research, University of Westminster

1. Service Evaluation of
‘Living Well with the Impact of Cancer’
Courses
Dr Marie Polley
University of Westminster
Dr Helen Seers, Dr Sarah Jackson,
Rachel Jolliffe, Emily Boxell
Penny Brohn Cancer Care
Audio missing 1/3

2. Marie Polley:
University of Westminster, London
Chair of working party, British Society for Integrative
Oncology (BSIO)
Dr Helen Seers PhD, Dr Sarah Jackson PhD,
Rachel Jolliffe MSc, Emily Boxell MSc:
Penny Brohn Cancer Care
Independent to service provision
Part funded by James Tudor Foundation
Audio missing 2/3

3. Living well with the impact of cancer
 2 day course - response to UK’s National Cancer
Survivorship Initiative (NCSI) ‘Vision’
 Multidisciplinary team; experienced facilitators, medical
doctors, psychotherapists, nutritional therapists
 Residential and non-residential available (across UK)
 People with any type of cancer, any stage in cancer
journey
 Supporters and family
Audio missing 3/3

4. Aims of the service evaluation
To measure participant benefit of the ‘Living Well with the
Impact of Cancer’ course
Understand ‘lived experience’ 12 months post course
Scientifically document impact of course
Identify service provision needs – effective use of money
Ensure quality assurance and best practice across UK
courses
Inform commissioners, funders and policy makers
Inform comparative effectiveness study design
SIO 2013

5. Penny Brohn Whole Person Approach
Education
Lifestyle advice
Diet, exercise
Relaxation
Psychological
Spiritual
Physical
Impact of
cancer on
whole person
Financial
Emotional
Relationships
Group discussion
Support
Self help
techniques:
Breathing
Meditation
Visualisation
Mindfulness

6. Baseline
Recruited (n = 171)
MYCaW
FACIT-SpEx
Lifestyle Q
Post course (n = 171)
MYCaW FACIT-SpEx
Lifestyle Q
In-house evaluation
6 weeks (n = 123, 72%)
MYCaW
FACIT-SpEx
Lifestyle Q
Participant experience
3 months, (n = 119, 70%)
6 months, (n = 109, 64%)
MYCaW
FACIT-SpEx
Lifestyle Q
12 months (n = 86, 50%)
Clients ‘booking on course’ over
5 months Aug 2011 – Jan 2012
(Ethics approval from University of Westminster)
MYCaW
FACIT-SpEx
Lifestyle Q
Participant experience

7. Data analysis
Quantitative data:
Participant characteristics baseline & 12 months
Score changes: FACIT-SpEx and MYCaW concerns,
Changes in frequency of exercise, food intake, use of stress
management techniques
Analysed for effect of cancer type, age, gender, relationship…
Qualitative data: ‘experience’ + deeper understanding
Framework analysis of MYCaW concerns – why attend?
Thematic analysis - course impact; wider impact ;
barriers/facilitators to change
Profiled ‘groups of interest’ e.g. supporters, returners to
PBCC, clients with metastatic disease

8. Disease status
1° treatment
Finished 1°
2° treatment
51.1%
21.2%
19%
Ethnicity:
18 ethnicities, majority white
British
12 month cohort comparison
Few differences:
Deceased
Finished 1°
7.6%
62%

9. Health status at 12 Months
4%
11%
Undergoing hospital treatment for
primary tumour
Hormone treatment only
Finished treatment in the past year
and no sign of cancer
Finished treatment over a year ago
and no sign of cancer
9%
39%
10%
7%
Finished treatment but still
experiencing side effects
Finished treatment but cancer still
present
Local recurrence detected
Distant metastasis detected
Undergoing treatment for metastatic
disease
Palliative treatment
2%
7%
3%
3%
3%
2%
Deceased
Non responder at 12 months

10. Participant experience of the
LW course (post course)
Meeting expectations:
4.5/5
 Meeting needs:
4.6/5
 Pacing of course:
just right 59%; too fast 17%
 91% found the course handbook helpful during the course
 80% found the course handbook helpful after the course
 77% found the action plans helpful

11. “ I was apprehensive of the unknownness of being
here, but it has just been amazing”
“ The chance to share healing processes rather
than always focussing on diagnosis and
treatment. The course was a little intense at
times.”
Living Well course participants

12. Was anything particularly helpful
or unhelpful?
The Course in general
“Found a little from each session very helpful.”
Sharing with Others
“I think seeing people who understand the pain and hurt around
both having an illness and supporting and trying to care for
someone who is ill.”
The Doctors’ Talk
“Explanation of the science behind things and the research done.”
Food and Nutrition
“The session on diet, wish it had been longer.”
Relaxation, Meditation and Self Help
“To learn that not only did meditation calm the mind but also
improve the immune system.”

13. Does the course address their concerns?
7
Coding framework MYCaW MYCaW
in Polley et al Concern Concern
1
2
(2007)
Psychological +
emotional
40%
47%
Wellbeing
concerns
17%
18%
Physical
19%
9%
Practical
concerns
7%
16%
Supporter
concerns
8%
6%
Hospital
concerns
9%
4%
6
(n=153)
5
4
Mean score
(n=163)
n=153
n=163
n=151*
n=115*
n=115*
n=103*
n=83*
n=145*
n=108*
n=106*
n=103*
n=79*
3
2
1
0
Concern 1
Track new concerns over 12 months
e.g. pain, fear of recurrence, family and relationships…
Concern 2
n

14. Lifestyle changes: Exercise
Frequency of exercise
Baseline
None
9% (n=15)
1-2 times per week
20% (n=34)
3-5 times per week
36% (n=61)
Over 5 times per week
31% (n=53)
 13/15 people started after the course
 20% increased frequency of exercise per week
 Majority continued with frequency of exercise through 6-12 months
 Some participants increased intensity level / duration
 24% said LW course inspired them to be more physically active,
often this was via a group activity

15. Lifestyle changes: Diet
Food item
On
On target
target at at 6 weeks
baseline
(%)
(%)
On target
at 3
months
(%)
Improvement
at 6 weeks?
Improvement
at 3 months?
improvement
at 12
months?
Red meat
94
98
97



Dairy
Caffeine
Damaged fats
Salt
BBQ food
Whole grains
Healthy fats
Herbs
Protein
Veg and fruit
Refined
grains
Processed
meat
Alcohol
Pulses
Soya
74
90
85



65
82
78



65
83
79



95
98
99



94
97
97



47
44
52
X


69
72
65

X

57
59
51

X
-
52
56
45

X
-
20
27
32


X
28
34
41


X
87
91
92


-
76
75
79
-

X
6
5
7
-
-
-
91
83
89
X
X
-
Indicates an improvement, x indicates deterioration and – indicates no change (0-1%)
in recommended food intake compared to baseline data.

16. Lifestyle changes: Self help
 80% practising self help/stress management techniques
before coming on the Living Well course
 Living Well course encourages people to do a wider range
of self-help techniques
“I remind myself to relax when I get uptight and then
practise visualisation and breathing techniques. I also
take more of an interest in sounds when walking in the
woods, something I remember from the meditation
group.” (Living Well Participant)

17. Health related QoL (excluding supporters)
Baseline
to
post
course
Total HRQoL
Baseline
to
6 weeks

(p<0.000)

(p<0.000)
Baseline
to 3
months
Baseline
to 6
months
Baseline
to 12
months
Significant
improvement
over time?
X

(p<0.000)

(p<0.000)
 (n=47)

(p=0.003)
X
(n=51)
X
(n=53)
Physical
wellbeing
X
X
X

(p=0.007)
Social
wellbeing
X
X
X

(p=0.02)
X

(p<0.000)

(p<0.000)
 (n=52)
X

(p=0.009)

(p<0.000)
 (n=52)

(p=0.003)

(p<0.000)
 (n=50)
Emotional
wellbeing

(p=0.004)
Functional
wellbeing

(p=0.001)
Spiritual
wellbeing

(p<0.000)

(p<0.000)
X

(p<0.000)

(p=0.01)
X

18. The wider impact
“I’ve been more confident in how I have dealt with
my illness and feel that taking responsibility for my
wellness has enabled me to speak to professionals
about what I want. My attendance on the course
was a real education for which I am very grateful.”
Living Well course participant

19. 6 wks
Improved diet, exercise, relaxation
New activities, group based
Open communication: personal, medical
6 wks – 3 mn
3 - 6mn
6-12 mn
I know what I should do
Unsupported
Progressive disease
Confused/ forget
Old Habits
Time - return to work / family
Unhealthy socialising; comfort / reward
Life
Health Related Quality of
Understand
Regain Control
Implement
Experiment
Education; Support; Tools
Empowerment
Low baseline
emotional
Deeper appreciation of life
wellbeing score Responsibility for own health
Return to PBCC; personal support

20. Barriers to change
"I feel it is very difficult trying to get family and friends to try
to understand how important it is for me to eat and live as
healthy as it is possible. They don't believe in special
healthy eating, sometimes I feel as though they feel I am
over the top in my wanting to eat healthy and sometimes
scoff at my decisions. They don't believe in it making any
difference to my having had cancer or trying to prevent it
coming back. Yes it is very hard making changes from
living on everyday foods for years..."
Living Well participant

21. The supporters - MYCaW
Psychological and emotional concerns
Family problems and relationships
Emotional problems
Psychological issues
Supporter concerns
 Physical health of
patient
 Providing support for
patient
 Mental health of
patient
Practical concerns
 Finances
 Work
Scores:
Similar to people with cancer
Severity at baseline
Degree of change
Significant change over 12mn

22. The supporters - experiences
 Emphasis on supporters’own wellbeing
 Time for themselves to relax with other supporters who
understood
 Patients’worries eased
 Patient and supporter had closer relationships; more open
communication
 Supporter more informed about cancer from patients’
perspective – ‘effective’ supporting
 Help supporter to accept the diagnosis
 Would they recommend the course?
“YES!!”

23. The supporters - experiences
“Many people on the course who had the disease
themselves, said they thought it was far harder for family
and carers to deal with, than the person with cancer. So
I found myself amongst friends. Also my partner was
cared for and I found I could relax a bit and concentrate
more on my own needs. The staff made this clear, I was
there for myself. I got wonderful inspiration, ideas and
new contacts.”
(Living Well Evaluation Participant: Supporter)

24. The supporters - experiences
“ I was extremely grateful they came on the course with
me…They benefited from being able to talk freely with
other course members, share experiences and fears. I
was extremely pleased to see them interact with the
others during the breaks – it did them a lot of good which
in turn greatly gladdened me.”
(Living Well Evaluation Participant: Patient)

25. The supporters - experiences
“As a supporter you need all the help you can get to
‘support in the right way’ and Penny Brohn offers that.
Also what is beneficial health wise for the cancer patient
is also good for the supporter, who will have to learn to
deal with raised stress levels.”
(Living Well Evaluation Participant: Supporter)

26. Service provision implications
Benefit to clients can be measured Quality assurance benchmarks for national courses
 Education helps people take responsibility for their wellbeing
 Improved confidence to communicate with medical
professionals
 Increased uptake of social activities, many incorporating
physical activity
 Sustained improvement in concerns and QoL for many
clients
 Barriers to sustaining change identified

27. Research questions and projects
How do we promote long-term wellbeing?
 Effective use of resources, individualised support
 Increase proportion of clinically relevant improvements in QoL
Further development and validation of MYCaW
 Mapping patient reported concerns with QoL tools
 New categories for supporters

28. Research questions and projects
How to measure the full impact of the whole person
approach
 Understand the new associations in the WPA
 Understand experience of ‘returners’ to PBCC
 Further exploration; supporters and clients with metastasis
 Economic evaluation
 Further development of international collaborations

29. “Penny Brohn saved me! I was seriously
struggling before I came to Penny Brohn.
I thought after my cancer treatment my life
would go back to normal. It didn't. Coping
with the disabilities the treatment left me
with has been so very difficult, but Penny
Brohn is really helping me to heal and
move on. Thank you!”

30. THANK YOU