Dr. Kate Lorig and the Self-Management Approach to Chronic Illness

This is the first in a series of postings on Innovators in Behavioral Health. They are people I have admired from afar for many years. They have changed the lives of millions of others around the world and while they have received many awards and are highly regarded by their peers, they are hardly household names. They should be. Perhaps you or someone you know can benefit from the innovative programs and tools they have created.

"In traditional care, professionals are the experts who tell patients what to do. Patients are passive. In the self-management approach, expertise is shared. Professionals are experts about the disease; patients are experts about their lives."—Kate Lorig, R.N., Dr. P.H.

When she was three years old, Kate Lorig was diagnosed with Gaucher disease—a rare hereditary disorder caused by an enzyme deficiency and characterized by enlargement of the spleen and liver, bone lesions, and in some cases neurological impairment. At age nine, her parents were told that she would be "retarded." Instead she had a normal childhood and went on to make remarkable contributions to the field of patient education. 

Dr. Lorig, who has a master's degree in nursing and a doctorate in public health, is Professor of Medicine and Director of the Patient Education Research Center at Stanford University. She began her career at Stanford's Arthritis Center as a research associate in 1978 and, with the help of arthritis specialists, health educators, physical and occupational therapists, she developed the first Arthritis Self-Management Program.

During the six-week program, small groups of patients meet to talk about the day-to-day challenges of living with a chronic illness with an emphasis on:

• Problem-solving and patients helping patients
• Managing pain, fatigue, depression
• Exercise, healthy eating, relaxation techniques
• Communication skills
• Goal setting and action planning
• Improving self-efficacy (self-confidence)
• Self-tailoring (patients using tools that work best for them)

The program is offered throughout the U.S. by the Arthritis Foundation and has also been offered in Canada, the United Kingdom, Australia, New Zealand, South Africa, China, Scandinavia, and St. Lucia. It has become the prototype for all the Stanford programs which cover a range of chronic conditions and are offered in community settings as well as on the Internet.

Proven effective in randomized clinical trials, the programs are designed to help participants "gain self-confidence in their ability to control their symptoms and how their health problems effect their lives."

Educational materials for patients and healthcare professionals are available in print, audio and video, and include:

• Living a Healthy Life with Chronic Conditions
• The Arthritis Helpbook
• Living Well with HIV & AIDS
• The Back Pain Helpbook

The Stanford program has been recently licensed and adapted by the National Council on Aging. Better Choices, Better Health® is a free workshop available in all 50 states and online. Please see link below for more information.

Dr. Lorig and her colleagues are currently working on online programs for people living with diabetes and  for caregivers of people with traumatic brain injury, post traumatic stress, and dementia.

Future postings will feature the researchers who developed the stages of change and motivational interviewing models.

References and Resources

Kate Lorig's story: from Gaucher Disease to developing self-management courses worldwide. Gauchers Association. Accessed at

http://www.gaucher.org.uk/enews.php?id=252http://www.gaucher.org.uk/enews.php?id=252

Marcy J. Chronic Disease Expert: U.S. Health Care System Needs To Treat "Whole Person." Kaiser Health News, June 25, 2010. Accessed at http://www.kaiserhealthnews.org/Checking-In-With/lorig-chronic-disease.aspx

National Council on Aging Program, Better Choices, Better Health®: http://www.ncoa.org/