A self-management programme developed by Professor Kate Lorig at Stanford University has operated in the US for several years. It includes symptom management techniques, nutrition, sleep management, use of community resources, medication and dealing with emotions.
A randomised controlled trial with patients aged 40 and over with chronic lung disease, heart disease, stroke and arthritis showed that those in the programme group made improvements in symptom management, communication with doctors, and social activities. They also had fewer hospitalisations and days in hospital than those in the control group. But no differences were found in pain or physical discomfort, shortness of breath, or psychological well-being.3
Much education is directed at increasing knowledge, but this alone does not create the changes in behaviour necessary to manage conditions successfully. A report by the British Diabetic Association found that, despite patient education, as few as 7 per cent of adults with insulin-dependent diabetes follow all the steps practitioners consider necessary to achieve good control of glucose levels.4
The development and evaluation of self-management programmes is more widespread in the US. But much of this work has been carried out in hospitals. One researcher concluded: 'There seems little doubt from the American studies that intensive education intervention and support can reduce morbidity associated with asthma, but the complexity and cost of these interventions makes them unsuitable for large-scale use in primary care.5
Similarly, the BDA found that although well over 100 studies had evaluated diabetes education, these had tended to be 'small and short and based in the hospital setting rather than in the community, where a growing proportion of people with diabetes now receive their care'.
Professor Lorig's programme has been used in the UK by Arthritis Care and the British Liver Trust. In September 1998, the Long-Term Medical Conditions Alliance began a three-year research project funded by the Department of Health, the King's Fund and Glaxo Wellcome.6
The Living with Long-Term Illness (Lill) project is working with eight organisations to develop a seven-week patient education course. Each session will last two-and-a-half hours and will be delivered by volunteer self- management tutors.
Topics will include pain management, diet, exercise, communication skills, action plans for change, and dealing with feelings of anger, fear and frustration. The project also aims to collect information about other self-management initiatives and convene a network to share information and good practice.