The aim of the Penny Brohn Cancer Care Living Well Service Evaluation was to measure the level of benefit that participants were receiving from the Penny Brohn Cancer Care(PBCC)Living Well course and to inform current and future service provision at PBCC.
The Penny Brohn Whole Person Approach model(PB-WPA model), which underpins the Living Well course, was designed to support the ‘whole person’ and the course was
intended to meet the needs of people with cancer, as identified by the National Cancer Survivorship Initiative (NCSI).
The combined qualitative and quantitative results of the Living Well Service Evaluation have demonstrated, very clearly at times, that participants were highly satisfied with the course. The immediate benefit of attending was measurable, in terms of improved health related quality of life (HRQoL) and improved MYCaW (Measure yourself Concerns and Wellbeing) concerns and wellbeing.
The evaluation results show that the Living Well course experience enabled the majority of participants to regain control over many aspects of their life, and to start
taking responsibility for their health. The following aspects of the course were identified as the most helpful:
-Specific units of ‘education and explanation’ about cancer and why healthy lifestyle changes to areas such as diet, exercise and relaxation are beneficial
-Advice and education from medical doctors
-The opportunity to share experiences with other participants
For some, this empowerment led to long-term changes in exercise, food consumption,use of self-help techniques and the ability to communicate more freely and openly with family, friends and medical professionals. These improvements were reflected in the 12 month outcome data, where a sustained improvement in HRQoL and MYCaW concerns
was reported by many clients.
Such patient reported outcome measures (PROMs) are limited in what they can measure, thus qualitative data were also collected to ensure that participants were able
to share their experiences (positive or negative) of the Living Well course, and their subsequent experiences of applying the education and techniques learnt on the
course.
A picture emerged that identified difficulties in sustaining lifestyle changes at around the 3-6 month follow-up. Participants who returned to PBCC within the 12 month follow-up period, however, were more likely to benefit by reporting a greater improvement in HRQoL and MYCaW scores, plus an improved understanding of how to
make and maintain healthy lifestyle changes to suit their individual circumstances.
In regards to the current NCSI priorities, it is hoped that the data reported in this evaluation go some way to informing the following:
-Information and support from the point of diagnosis
-Managing the consequences of treatment
-Promoting recovery
-Sustaining recovery
-Supporting people with active and advanced disease
-Improving survivorship intelligence
Finally, this report demonstrates how a patient-centred model of support can be effectively evaluated to provide relevant, practical and evidence-based information to
commissioners.
Participant satisfaction:
Participants were very satisfied with the course content, course delivery and resources provided which often exceeded their needs and expectations.
Participant outcomes:
The PB-WPA model successfully encompassed and supported all the types of concerns participants arrived with.
The most frequently reported participant concerns were psychological and emotional,about their wellbeing and about their physical health. On average, participants experienced statistically and clinically significant
improvements in their MYCaW concern and wellbeing scores, and total HRQoL scores,which remained improved over the 12 month follow-up. The aspects of HRQoL that were most likely to improve after attending the Living Well
course were spiritual, emotional and functional wellbeing. Supporters had their own profile of concerns, namely psychological and emotional,supporter specific concerns and practical concerns. Concerns were as severely rated as those from participants with a diagnosis of cancer and also showed statistically
significant average improvements throughout the 12 month follow-up.
The small group of participants with metastatic disease reported significant improvements in their MYCaW concern scores, in line with the whole evaluation group,and a significantly greater improvement in HRQoL over 12 months compared to participants with primary cancer.Participants who returned for more support from PBCC were in more need of support than those who did not return. They were more likely to have poorer HRQoL at baseline
and rate their concerns more severely.
Participants who returned to PBCC experienced more improvement in HRQoL that was likely to be clinically significant. These participants also had a greater degree of improvement in their MYCaW concerns, compared to non-returners. Over half of the participants experienced new concerns over the 12 month follow-up period. Concerns were most frequently associated with psychological and emotional
and physical issues. Furthermore, at 12 months, participants were still experiencing arange of health issues
