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

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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

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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

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SIO 2013

Aims of the service evaluation

Scientifically document impact of course Identify service provision needs – effective use of moneyEnsure quality assurance and best practice across UK coursesInform commissioners, funders and policy makersInform comparative effectiveness study design

To measure participant benefit of the ‘Living Well with the Impact of Cancer’ course

Understand ‘lived experience’ 12 months post course

Relationships

Impact of cancer on

whole person

Physical

Psychological

Spiritual

Financial

Penny Brohn Whole Person Approach

Emotional

Self help techniques:BreathingMeditationVisualisationMindfulness

EducationLifestyle adviceDiet, exercise Relaxation

Group discussion Support

BaselineRecruited (n = 171)

Post course (n = 171)

6 weeks (n = 123, 72%)

3 months, (n = 119, 70%) 6 months, (n = 109, 64%)

12 months (n = 86, 50%)

MYCaW FACIT-SpExLifestyle Q

MYCaW FACIT-SpExLifestyle QIn-house evaluation

MYCaW FACIT-SpExLifestyle QParticipant experience

MYCaW FACIT-SpExLifestyle Q

MYCaW FACIT-SpExLifestyle Q Participant experience

Clients ‘booking on course’ over 5 months Aug 2011 – Jan 2012(Ethics approval from University of Westminster)

Data analysis

Quantitative data:Participant characteristics baseline & 12 monthsScore changes: FACIT-SpEx and MYCaW concerns, Changes in frequency of exercise, food intake, use of stress management techniquesAnalysed for effect of cancer type, age, gender, relationship…

Qualitative data: ‘experience’ + deeper understandingFramework 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

Disease status

1° treatmentFinished 1° 2° treatment

51.1%21.2%19%

Ethnicity: 18 ethnicities, majority white British

12 month cohort comparison Few differences:

Deceased 7.6% Finished 1° 62%

4%

11%

9%

10%

7%

2%

2%3%3%3%7%

39%

Undergoing hospital treatment forprimary tumour

Hormone treatment only

Finished treatment in the past yearand no sign of cancer

Finished treatment over a year agoand no sign of cancer

Finished treatment but stillexperiencing side effects

Finished treatment but cancer stillpresent

Local recurrence detected

Distant metastasis detected

Undergoing treatment for metastaticdisease

Palliative treatment

Deceased

Non responder at 12 months

Health status at 12 Months

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

“ 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

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.”

Coding framework in Polley et al (2007)

MYCaWConcern

1 (n=163)

MYCaW Concern

2(n=153)

Psychological + emotional

40% 47%

Wellbeing concerns

17% 18%

Physical 19% 9%

Practical concerns

7% 16%

Supporter concerns

8% 6%

Hospital concerns

9%4%

n=153n=163

n=145*n=151*

n=108*n=115*

n=106*n=115*

n=103*n=103*

n=79*n=83*

0

1

2

3

4

5

6

7

Concern 1 Concern 2 Wellbeing

Mea

n sc

ore

Does the course address their concerns?

Track new concerns over 12 monthse.g. pain, fear of recurrence, family and relationships…

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

Lifestyle changes: DietFood item On

target at baseline

(%)

On target at 6 weeks

(%)

On target at 3

months(%)

Improvement at 6 weeks?

Improvement at 3 months?

improvement at 12

months?

Red meat 94 98 97

Dairy 74 90 85

Caffeine 65 82 78

Damaged fats 65 83 79

Salt 95 98 99

BBQ food 94 97 97

Whole grains 47 44 52 X

Healthy fats 69 72 65 X

Herbs 57 59 51 X -

Protein 52 56 45 X -

Veg and fruit 20 27 32 X

Refined grains

28 34 41 X

Processed meat

87 91 92 -

Alcohol 76 75 79 - X

Pulses 6 5 7 - - -

Soya 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.

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 thenpractise visualisation and breathing techniques. I alsotake more of an interest in sounds when walking in the

woods, something I remember from the meditationgroup.” (Living Well Participant)

Lifestyle changes: Self help

Health related QoL (excluding supporters)

Baseline to

post course

Baseline to

6 weeks

Baseline to 3

months

Baseline to 6

months

Baseline to 12

months

Significant improvement

over time?

Total HRQoL

(p<0.000)

(p<0.000)X

(p<0.000)

(p<0.000)

(n=47)

Physicalwellbeing

X X X

(p=0.007)

(p=0.003)X (n=51)

Social wellbeing

X X X

(p=0.02)X X (n=53)

Emotional wellbeing

(p=0.004)

(p<0.000)

X

(p<0.000)

(p<0.000) (n=52)

Functional wellbeing

(p=0.001)

X X

(p=0.009)

(p<0.000) (n=52)

Spiritual wellbeing

(p<0.000)

(p<0.000)

(p=0.01)

(p=0.003)

(p<0.000)

(n=50)

“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

The wider impact

Return to PBCC; personal support

Ed

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Con

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Hea

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Rela

ted

Q

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of

Life

Low baselineemotional wellbeing score

New activities, group based

Responsibility for own health

I know what I should do

Empowerment

Improved diet, exercise, relaxation

Open communication: personal, medical

Deeper appreciation of life

Unsupported

Old Habits

6 wks – 3 mn6 wks 3 - 6mn 6-12 mn

Confused/ forget

Unhealthy socialising; comfort / rewardTime - return to work / family

Progressive disease

"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

Barriers to change

The supporters - MYCaW

Psychological and emotional concernsFamily problems and relationshipsEmotional problemsPsychological issues

Scores: Similar to people with cancerSeverity at baseline Degree of changeSignificant change over 12mn

Practical concerns Finances Work

Supporter concerns Physical health of

patient Providing support for

patient Mental health of

patient

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!!”

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)

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)

“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)

The supporters - experiences

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

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

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

Research questions and projects

“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!”

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