Self-management of a disease like arthritis has many facets. The Institute of Medicine defines it as “relating to the tasks that an individual must undertake to live well with one or more chronic conditions. These tasks include gaining confidence to deal with medical management, role management, and emotional management.”1
“Using any definition, it is important to see it from the perspective of the patient as a person,” says Anne Townsend, MA, PhD, affiliate researcher at the Arthritis Center of Canada in Vancouver. “Self-management means doing tasks like taking medications effectively, but also living as normal a life as possible and doing what is important to them.”
In the late 1970s, Kate Lorig, RN, DrPH, began to work with the concepts of an arthritis self-management program (ASMP) at Stanford University in Palo Alto, Calif. By the early 1980s, the first lessons were being taught.
“People with chronic illnesses live more than 99% of their lives outside the healthcare system,” says Dr. Lorig who is currently director of the Stanford Patient Education Research Center. “What they do in that time affects their health, quality of life, and utilization of healthcare resources. ASMPs give them the knowledge, skills, and the confidence to use those skills, to meet their full potential in the 99% of the time they are on their own.”
The Stanford Experience
The Stanford self-management program has been the most thoroughly studied, and is viewed as the gold standard. It is widely used in the U.S. and Canada, and has also been implemented in Europe.
ASMP, and its more general sister the Chronic Disease Self-Management Program (CDSMP), use two facilitators, at least one of whom is a consumer, to lead a six-week course. Participants attend a weekly two-hour session that covers subjects such as dealing with pain, fatigue, frustration, and isolation. It also touches on exercises, using medications, healthy eating, disease-related problem solving, and effective communications. The facilitators all receive four days of standardized training and they teach from the same training manuals. There are very stringent fidelity standards that keep the programs largely the same across all facilitators.
“In general, people end up with better health behaviors and fewer symptoms,” says Dr. Lorig.
When we asked people why they did not use resources such as the self-management programs, the prevailing reason was patients did not know they existed. Providers have a responsibility to tell their patients, and may increase patient satisfaction if they do.
