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Penny Brohn: evidence-informed practice/audit and evaluation

 

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Read the Living Well evaluation here (pdf)

All of the work done at Penny Brohn Cancer Care in underpinned by evidence -informed practice. The charity produces a range of evidence based information sheets underpinning all therapeutic work – carrying the Department of Health “Information Standard” kite mark http://www.theinformationstandard.org. These sheets are produced using a high quality content production methodology.

Evaluation of our services:

Living Well Course evaluation

Penny Brohn Cancer Care has an active programme of research which aims to explore how people live well with and beyond cancer.

Penny Brohn Cancer Care has recently completed an evaluation its Living well with the Impact of Cancer Courses – improving the service provision and giving an insight into the experiences of people on our courses. The report was published in 2013 (http://www.pennybrohncancercare.org/Page/Overview/living-well-evaluation).

Dr Helen Seers, Dr Sarah Jackson and Rachel Jolliffe at Penny Brohn Cancer Care worked collaboratively with Dr Marie Polley, Senior Lecturer in Health Science and Research at University of Westminster on this project. This work is built upon previous work assessing and

evaluating clients’ experiences at the centre, including mixed methods studies using the MYCaW evaluation tool (Polley et al. 2007 and Seers et al. 2009). This previous research reported clinically significant results for improvements in perceptions of concerns and wellbeing after attending Penny Brohn Cancer Care.

The latest evaluation work covers courses run between 2011 and 2012 and the report was published in 2013. The Living well with the Impact of Cancer Course offers information and support for people with cancer, to assist them in living well with and beyond their diagnosis. We wanted to determine if the service being provided is as helpful to participants as possible. Using a questionnaire called Measure Yourself Concerns and Wellbeing (MYCaW) we analysed the concerns people have at the beginning of the course, how the course addressed these concerns and tracked them for a year after coming on a course.

We are took measurements of psychological, social, emotional and spiritual wellbeing using Functional Assessment of Chronic Illness Therapy Spiritual Extended version (FACIT Sp Ex ). We also investigated peoples’ diet, exercise and stress management usage.

The evaluation looked at all people on Living Well courses between August and November 2011, following-up clients for 12 months after attending their course. We gathered data before and after a course, and then followed up with questionnaires 6 weeks, 3 months, 6 months and 12 months after attending.
Results

The results of the Living Well Course evaluation showed that the immediate improvements in people’s concerns and wellbeing seen directly after the course were sustained over 12 months.

The qualitative results; data gathered from comments, descriptions or written answers to questions, revealed that the ‘Living Well course’ experience helped the majority of people to regain control over many aspects of their life, and to start taking responsibility for their own health.

At 12 months 40% of respondents reported that the course ‘had directly inspired them to take up a new self-help activity’.

The combination of education about cancer, input from medical doctors and the opportunity to share experiences were consistently highlighted as some of the most beneficial aspects of the course, with exercise and nutrition emphasised as two key areas where people were motivated to try something different.

For some, this ‘empowerment’ led to long-term improvements in exercise, diet, the use of self-help techniques, as well as the ability to communicate more openly and honestly with family, friends and medical professionals.

35% expressed how the Living Well course had helped them to talk more openly with family members about their situation

Many participants left the course with an appreciation of the boundary between what the NHS can and cannot provide and what is down to the individual to be responsible for.

The increased confidence appears to stem from the education received on the course regarding cancer as a disease and the benefits of self-care and living a healthy lifestyle.

47% of respondents claimed that the course had made a difference to how they access medical services

Quotes taken from the report (names changed)

“ One of the most useful things about coming on the course was meeting others… after talking to them one thing became clear to me; it was really a question of choosing to live or facing up to the possibility of not”

Ceri

“ I had the opportunity to meet some excellent staff who offered brilliant support strategies and advice, which really helped me to realise that I was not on my own with this diagnosis but rather that help was there in abundance if I could just reach out for it”

Emma

“I still experience fear and anxiety about the future but the techniques and insights I learned really help me to keep on top of that fear”

Suzannah

References:

Polley MJ, Seers HE, Cooke HJ, Hoffman C, Paterson C. How to summarise and report written qualitative data from patients: a method for use in cancer support care. Support Care Cancer. 2007 Aug;15(8):963-71

Seers HE, Gale N, Paterson C, Cooke HJ, Tuffrey V, Polley MJ. Individualised and complex experiences of integrative cancer support care: combining qualitative and quantitative data. Support Care Cancer. 2009 Sep;17(9):1159-67.

Polley M, Jolliffe R, Jackson S, Boxell E, Seers H. Penny Brohn Cancer Care: Service Evaluation of ‘Living Well with the Impact of Cancer’ Courses, Penny Brohn Cancer Care, University of Westminster, 2013. Available from: http://www.pennybrohncancercare.org/livingwell-fullreport

Jolliffe R, Polley M, Jackson S, Caro E, Weeks L, Seers H. The responsiveness, content and convergent validity of the Measure Yourself Concerns and Wellbeing (MYCaW) patient reported outcome measure. Accepted for publication: Integrative Cancer Therapies, 2014. (In press)

Evaluation of our services

Treatment Support Clinic

During the pilot phase of the Treatment Support Clinic, we have been collecting MYCAW data from all participants (Seers et al 2009).

Change in mean score after at least 3 clinic attendances for concern 1 was 1.53 (p=.001)

Change in mean score after at least 3 clinic attendances for concern 2 was 1.9 (p=.001)

Change in mean wellbeing score after at least 3 clinic attendances was 0.08 (p=.742)

NB As clients often completed their first MYCAW before or very early on in treatment when they were relatively asymptomatic, the fact that overall wellbeing did not improve significantly over the evaluation period is not surprising. A comparison control group would be useful to investigate whether Treatment Support Clinic users’ wellbeing was better maintained than expected in the circumstances.

User satisfaction forms are also collected. Satisfaction ratings of all aspects of the service are high (4s or 5s on a scale from 0 to 5). Examples of some of users’ free-text comments are listed below (see Section 7)

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