The Researchers consortium comprises NPCRDC staff and: Rusholme Academic Unit : Dr Carolyn Chew-Graham- General practice RAU University of York Centre for Health Economics: Professor Mark Sculpher & Dr Gerry Richardson. University of Bristol - Department of Social Medicine: Professor Jenny Donovan (Advisor)
Background - The Expert Patients Programme (EPP) is a new approach to chronic disease management which aims to embed lay led self-management training programmes for patients with chronic conditions in the NHS. There is a need to establish whether EPP training adequately responds to the needs of people with a wide range of chronic conditions including hard-to-reach groups from a range of communities. One of the key aims of the EPP programme is to bring about a concerted increase in the social capital and capacity for self-care in England.
Aims
- To examine the implementation of the EPP within the local NHS contexts (PREPP);
- To evaluate the clinical and cost-effectiveness of the intervention in this new setting (REPORT);
- To compare the experience of care received from services, ways of living with chronic illness and self-management styles prior to and after attending the training programme (Personal Experience of EPP training and personal chronic disease management).
Evaluating the process of introducing EPP (PREPP) - The process evaluation was designed to explore the reception and implementation of the EPP within different localities and new primary care organisations (PCTs). The evaluation described the national implementation of EPP in order to understand how self-management training was delivered within the organizational context of the NHS. The methods included: Postal questionnaire and telephone interviews with trainers and EPP representatives in PCTs, in-depth case study of 8 sites using a maximum variation sample, in-depth-interviews with key stakeholders, site visits, observation focus groups, documentary analysis. Results showed that the EPP was difficult to fit in with the way the NHS normally provides services (which are condition specific accessed through a health professional). Health professionals were difficult to engage. Recruiting sufficient people onto courses with a view to making an impact at a public health level was problematic. For PCTs, administrating and running courses was labour intensive and time-consuming. The management of volunteers was, in the main, poor as PCT administrators had no prior experience of this type of role.In the initial phase, the EPP courses drew in people already committed to self-managing and who tended to be white, middle class and well educated. Such people were a good potential source for course tutors which allowed for the expansion of the programme. However, if those who stand to benefit most from learning self-management skills (in particular people from ethnic minority groups and areas of high deprivation) are disinclined to participate, then one disadvantage is the potential to increase inequalities. The course is constructed to benefit those who want to increase their self-efficacy and take on responsibility for self-improvement.
Researchers: Anne Kennedy, Claire Gately, Anne Rogers.
Email: anne.kennedy@manchester.ac.uk
RCT of patients entering EPP (REPORT) - This RCT assessed clinical and cost effectiveness in terms of improvement in participants' health outcomes, cognitive symptoms, and costs of health care. The trial was a two-arm, patient level, randomised controlled trial. Follow up data were collected by post, using self-administered questionnaires. The RCT involved 629 participants in England with self-defined long-term conditions, who were randomised to either the EPP course or to a waiting list for the course. Patient outcomes were measured at six months. The EPP course increased patients' self-efficacy by a moderate amount, and had a relatively smaller impact on the amount of energy people reported (chosen as the health status outcome most relevant to people with a range of long-term conditions). There was no change in health services utilisation (sum of GP consultations, practice nurse appointments, A&E attendances and outpatient visits) although overnight hospital stays and use of day case facilities were reduced in the EPP group.
The health economics analysis looked at change in QALYs (Quality-Adjusted Life-Years) and cost-effectiveness. Those on the EPP course had one extra week of 'perfect' health per year. The analysis showed the programme is likely to be cost-effective because there was an overall small reduction in service utilisation which offset the costs of the intervention. There were small gains in secondary outcomes including psychological wellbeing and partnerships with doctors. There was high satisfaction with the course and particularly the experience of being in a group. Additional benefits may include reduction in social isolation. The trial results indicate the EPP is likely to be a useful addition to current chronic disease management provision. The results need to be interpreted with some caution, they are pertinent to people who volunteer to go on such a course and not those with long-term conditions more generally. Care must be taken in applying the results to individual patients and particular patient groups.
Researchers: NPCRDC/Rusholme Academic Unit - Peter Bower, Carolyn Chew-Graham- General Practice, Claire Gately, Anne Kennedy, Vikki Lee, David Reeves, Anne Rogers. University of York Centre for Health Economics - Gerry Richardson- Health Economist.
Email: peter.bower@manchester.ac.uk
Patient's experience of EPP - Many of the issues implicit in theories of self-care have not been addressed in previous trials and assumptions underlying traditional psychological approaches do not always reflect accurately the action of people and tend to ignore the role of meaning and context in the purposeful action of individuals and downplay the importance of social networks and other social processes. Thus, this third element of the evaluation was an embedded qualitative study which used the narrative accounts of a purposive sample of respondents about their experience of managing their chronic illness prior to and subsequent to undertaking an EPP course. The personal experience study allowed us to explore some of the processes underlying the trial outcomes. Improved self-efficacy was related to people feeling better about their actions because they were able to compare themselves to others in the group and to identify with others who share their experiences of living with a long-term condition. The course reinforced the value and salience of people's pre-existing self care activities, rather than initiating alternative behavioural changes, people who already saw themselves as good self-managers felt they had nothing new to learn. It also suggests that people may be content with the self-management strategies they have already developed. Possible reasons for the lack of change in use of primary care services and outpatient attendances are:
- Individuals had already established routines of consulting;
- Service use is influenced by the supply side: i.e. organisational imperatives to attend for tests, monitoring and repeat prescriptions;
- The delivery of the course is divorced from the advice and actions provided by professionals working in the health service.
People who reported more complex or troubled relationships with service providers (often those with symptoms conventional medicine could not explain) may be more likely to alter use or views about services as a result of course attendance. Some individuals moved on to use sources of help and support other than the NHS and attending the course legitimised feelings that people had reached the limits of what traditional service contact could do to help.
Researchers: Claire Gately, Anne Rogers.
Email: Claire.Gately@manchester.ac.uk |
