Introduction

Suppose you suffer from osteoarthritis (OA). Have you added up the amount of time you spend seeing a doctor, nurse, or other health professional about your condition, and how much time you spend looking after yourself? You probably came up with less than 12 hours a month getting treatment and advice from health experts, leaving over 700 hours a month when you take care of yourself. Wouldn't it make sense for you to learn how to 'manage' your condition yourself?

The pain and fatigue caused by OA impact all aspects of someone's life. Professor Julie Barlow, of Coventry University, UK, has launched several programs to help OA patients manage their own condition. The idea is that they learn about their disease, make decisions about its management, and learn how to manage at home, making continual adjustments according to how well they are doing.

The Program

The concept of an arthritis self-management program was developed by doctors at Stanford University, USA, in the 1980s¹. It has since been delivered in many countries, and it's being used as a model for extending the idea to other chronic diseases.

Groups of 10 to 15 people with moderately severe OA meet weekly for 2½-hour sessions at a suitable venue - a hospital conference room, the public library, even a pub. There two tutors for each group; these are people with OA themselves who are not health professionals, but have been trained to run the meetings. Their job is to get the participants to be active in planning specific goals, problem-solving, and role-playing.

The meetings cover a wide range of topics. First and foremost, there's information about types of arthritis and arthritis medication. The benefits of exercise and the right nutrition are explained. How to manage symptoms through mental processing is discussed. And experience in dealing with depression is shared. Finally, there is a session devoted to improving communication between the patient and the health professional.

How Successful is the Program?

Several studies have been done that compare the benefits of the program with not doing anything. They show that there's improvement in the patient's confidence (called arthritis self-efficacy) and in their healthy behavior. Fatigue is diminished, and there is less depression. Also, the number of visits to the doctor is reduced by up to 40%. In one UK study, there was reduction in pain reported at 12 months.

That obscure measure, Quality of Life, seemed to be improved, judging by quotes of participants:

• "We talked, we laughed, and we learnt. We came home feeling better"
• "We can take control of arthritis instead of it being in control of us"
• "The hospital says go and exercise and that's it. The course showed me how to make exercise part of my life."
• "It's almost as if I've stopped aging and started to get younger!"

As a 'side benefit', older volunteer tutors reported that they had found a new purpose in life, and 'felt a valued member of the community again'.

The Future of Self-Management Programs

When self-management is intended for chronic disease patients with more serious conditions, such as heart disease or stroke, the program may include information about living wills (advance directives), as well as anger, fear, frustration and fatigue management.

In the UK, Professor Barlow has done an exploratory program in people with a diversity of disorders that include chronic fatigue syndrome (CFS, ME or myalgic encephalitis), post-polio syndrome, osteoporosis, endometriosis, diabetes. Future programs may include heart attack (myocardial infarction or MI), and bipolar disorder (manic depression).

Conclusions

The available results from self-management programs show that they can:

• provide a therapeutic 'tool kit' for people with chronic disease
• provide the means to change behavior
• help acceptance.
• increase the patient's sense of control (self-efficacy)

In some studies (but not all) they have reduced healthcare costs; this is probably due to differences in national healthcare environments and the conditions being managed. The overall picture is, however, extremely positive, as the quotations from participants (and tutors) testify.