What was the aim of the project?
Penny Brohn UK is a leading UK charity specialising in helping people to live well with cancer, particularly focusing on self-management education.
The Penny Brohn UK Wellness Package was developed to support people with cancer and their close supporters to live well with the impact of cancer and its treatments by providing access to person centred holistic lifestyle advice (diet, exercise and self-help techniques). It comprises the ‘Living Well with the Impact of Cancer’ (Living Well) two day course plus 12 months of follow-up support.
The Living Well course had been evaluated in 2012. The evaluation identified a a need to provide ongoing support to clients, particularly three to six months after the course. The 12-month post-course follow-up was designed in direct response to this.
The Wellness Package aims to promote and sustain recovery of people with cancer.
Who was involved in the project?
The project involved staff at Penny Brohn UK and participants of the Wellness Package.
What was the aim of the evaluation?
The aim of the evaluation was to gauge the overall impact of the Wellness Package, particularly looking at the impact of the follow-up support. The evaluation objectives were to:
- measure the impact of the Wellness Package on self-management
- monitor if levels of wellbeing, cancer related concerns and lifestyle changes are supported and maintained over 12 months due to the combination of Living Well course and follow-up support provided
- assess whether the Wellness Package has changed clients’ use of healthcare services.
Who was involved in the evaluation?
Dr Helen Seers, Research and Evaluation Lead at Penny Brohn UK was the lead evaluator, and worked with her inhouse team.
What did they do?
The evaluation combined qualitative and quantitative (mixed methods) data obtained from client evaluation questionnaires over 18 months. Six questionnaires were used in order to gather information relating to a range of outcomes:
- A bespoke pre-course form to capture demographic information and use of NHS services.
- Patient activation measure (PAM) – an internationally used and validated patient reported outcome measure (PROM) measuring level of ‘activation’; the knowledge, skills and confidence to manage one’s own health.
- MYCaW (measure yourself concerns and wellbeing questionnaire) – a validated patient centred outcome measure (PCOM) designed to measure the impact of cancer support services on the severity of people’s cancer related concerns and wellbeing.
- Health and wellbeing wheel – a Penny Brohn UK bespoke tool which asked people to rate all aspects of their health and wellbeing; mind, community, body, practical issues, spirit, environment, emotions and relationships.
- End of course patient reported experience measure (PREM) –an in house evaluation form to assess client satisfaction with the course and the Penny Brohn UK national centre.
- Six week and 12 month post-course evaluation forms – bespoke PREMs designed to collect in-depth information on clients’ experience of the Living Well course and any resultant changes over the 12 month post course period.
What did they find?
The results of the evaluation indicated that concerns and wellbeing improved, positive lifestyle changes were made, people were more able to self-manage their health and changed the way they accessed healthcare services.
- 519 participants were recruited to the evaluation, from 60 Living Well courses held between July 2014 and January 2016 and 120 clients from follow-up days between July 2014 and January 2016.
- PAM scores were significantly improved six weeks after the Living Well course. The biggest improvements were in clients starting at the lowest levels before the course.
- The most commonly reported concerns expressed were psychological and emotional; MYCaW scores for concerns and wellbeing were significantly improved at six weeks and 12 months after the Living Well course.
- The majority of Living Well course clients made some positive lifestyle changes for example, 84% improved their diet and 90% of participants said the course had helped them to self-manage their health more effectively.
- Some of the barriers they may face are treatment side-effects, bad weather and comfort of unhealthy foods.
- Participants reported high levels of satisfaction with the Living Well course finding support received, content of sessions, and information on self-help techniques among the five most frequently mentioned areas of particular helpfulness.
- Six weeks post Living Well course, the majority of clients perceived that it had helped them to self-manage their health; some people reported wider positive consequences and life changes triggered by the course.
- There was limited data on healthcare service use which was self-reported. However results showed a reduction in the use of health services over the follow-up period.
- Follow-up support was unanimously considered to make a difference with the most common reason being that it motivated participants to continue with healthy lifestyle changes. Support received, information on diet and sharing with others/peer support were some of the things participants found most helpful.
Who was the evaluation shared with and why?
The evaluation is being disseminated widely through various networks and forums such as the South West Evaluator Forum and the Q community – a connected community working together to improve health and care quality across the UK.
Penny Brohn UK also took part in the Realising the Value programme; a national project commissioned and funded by NHS England. It was set up to support the NHS Five Year Forward View and aimed to build the evidence base for the development of person-centred, community based approaches for health and wellbeing. The Realising the Value programmed identified five key approaches with the potential to improve the quality of life of people living with long term conditions:
- peer support
- self-management education
- health coaching
- group activities to support health and wellbeing
- asset-based approaches in a health and wellbeing context.
Penny Brohn UK were selected as a partner site in 2015 to represent self-management education. Evaluation data from Penny Brohn UK has been fed into the design of an economic model to show the potential economic impact of these approaches. The economic modelling tool suggests that approximately £13,700 in wider social impact is generated per person who receives Penny Brohn UK’s self-management interventions for people with cancer. Click here for further details on this economic modelling tool.
Through the Realising the Value programme, the evaluation team at Penny Brohn UK were able to share the learning from their Wellness Package evaluation and promote self-management education. This raised the profile of Penny Brohn UK and is helping to influence national policy.
Penny Brohn UK are continuing to provide the Wellness Package to people with cancer and their close supporters. By sharing the results of this evaluation, Penny Brohn UK hopes to alert commissioners to the huge potential for investing in self-management education, enabling more people to take control of their health and wellbeing and live as well as possible.
What has changed as a result?
The results of the evaluation provide valuable insights into the impact of a self-management course and follow-up support for people with cancer and their supporters. The evidence collected has enabled Penny Brohn UK to gain funding from many other national sources to enable further spread of services to support even more people living with cancer.
Successes and challenges
The evaluation findings enabled Penny Brohn UK to gain funding for their programme from The Department on Health. The Wellness Package was positively received and met clients’ needs and expectations. The observational evaluation data showed a positive impact on self-management, health related quality of life and lifestyle changes.
There were some limitations to this evaluation including having less time to collect data than originally hoped, due to the reporting timescale. Also, it was not always possible to track the use of follow-up services and connect these to participants of the Living Well course. Therefore the evaluation did not contrast those who completed the Living Well course with or without follow-up support.
Evidence for the economic benefit of the Wellness Package could be strengthened through collection of system recorded healthcare usage data, rather than clients own self-reported usage.
For further information