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.
—Teresa J. Brady, PhD
Literature Shows Usefulness
Over the years, there have been many published articles on self-management. Teresa J. Brady, PhD, senior behavioral scientist with the Centers for Disease Control and Prevention’s Arthritis Program in Atlanta, and colleagues performed a meta-analysis focusing on the Stanford programs. They conclude that both ASMPs and CDSMPs do benefit patients. “The strongest finding is that [the programs] changed self-efficacy and increased a person’s confidence in their ability to manage their condition,” she says. “We found robust improvement in psychological factors such as depression and health distress.”
There was a modest impact on symptoms, and minimal response in healthcare utilization. Small to moderate improvements were seen in exercise, cognitive symptom management, and communication with their physicians. “I think of these as building blocks,” says Dr. Brady. “They first learn how to be a patient with a chronic disease and then evolve into active disease managers. After that, they start to learn and implement disease-specific skills.”
Oh, Canada
The experience of implementing self-management programs has traveled different pathways in the United States and Canada. In Canada, the country’s Arthritis Society has national responsibility for the self-management program and steady financial support. “ASMP is one of our core programs, and our provincial divisions offer it in their communities,” says Lynn Moore, director of public affairs for the society’s national offices in Toronto. “Much of the infrastructure for the programs runs through the national office. We hold the license, oversee master trainers, and do most of the quality-control work.”
It is left to the divisions to find, train, and use their facilitators. The local offices also find the appropriate places to host the programs, and publicize their availability.
Moore says they have been fortunate to have long-standing and consistent financial support. Grants at the national level pay for about half of their expenses with the rest made up from general revenues and donations. At the divisional level, money to run the program comes from local foundations, community funding, and local corporate money.
Even with all of this, there are major roadblocks to implementing these programs. Last year, there were about 170 programs offered nationally in Canada, with around 1,800 people graduating. “Canada is a large and diverse country and there simply isn’t capacity to give it in every community,” says Moore. “We have to work with our volunteer facilitators, and six weeks is a long commitment. It is also hard to travel to the smaller areas, especially in the winter.”
Variable U.S. Experience
The history of these programs in the U.S. has been varied and subject to periods of feast or famine. “The Arthritis Foundation [AF] a few years ago dropped support of the program and there has been no national infrastructure since,” says Dr. Lorig. “The CDC has funded some state programs, and there are very active programs in these states.”
Over the last two years, there has been progress in re-establishing support structures in the U.S. Funding from the American Recovery and Reinvestment Act of 2009 (ARRA) included $27 million to the Administration on Aging to fund evidence-based self-management training in community settings with a focus on Stanford’s CDSMPs. The National Council on Aging (NCOA) was selected as the national technical assistance center for the initiative.
Money from the act provided states with resources to develop a local ability to deliver these programs to 50,000 people. NCOA also received a donation from pharmaceutical company Sanofi Aventis to develop a website that would assist people with chronic illnesses find workshops in their community. Resartliving.org, run by the National Council on Aging, also provides free access to an online version of the workshops called “Better Choices, Better Health.” (See “Website Devoted to Self-Management Issues.”)
“AF was one of the first disease-related foundations focusing on evidence-based programs and active in development of ASMP,” says Cindy McDaniel, vice president of Consumer Health at the Arthritis Foundation’s national office in Atlanta. “We have encountered challenges in maintaining the reach of ASMP recently, which is why we are anxious to team up with NCOA.”
In the beginning, there was a strong demand for self-management education. Nationally, many programs stopped getting people to attend and withered more than actually ended. Although there have been no studies on the issue, many theories have been suggested.
“One of the problems with self-management is that people have to take responsibility for their own care,” says Linda S. Ehrlich-Jones, PhD, RN, a clinical research scientist at the Rehabilitation Institute in Chicago. “It is one thing to have someone do something for you, and quite another to accept the onus of doing it yourself. Those with chronic diseases have other things on their agenda and things for themselves get pushed down the priority list.”
Dr. Lorig leans more toward lack of infrastructure as the limiting variable. “In just 18 months, some 70,000 people or more took part in the self-management programs supported by ARRA money in the U.S.,” she said. “In other words, when there is infrastructure, people will come.”
Another reason is that those motivated to self-manage their disease have more options to do it on their own. Some who might have taken advantage of ASMPs or CDSMPs now do many of the same things using the Internet, bulletin boards, and specialized chat rooms.
Why Rheumatologists Should Care
“One reason to get your patients into these programs is that at 12 months, they are likely to have increased confidence in their ability to manage their condition,” says Dr. Brady. “They are less likely to have feelings of hopelessness and helplessness, and have an increase in healthy behaviors.”
Another reason is a potential increase in patient satisfaction. Dr. Brady points to audience research showing that patients expect their physicians to recommend community resources. “When we asked people why they did not use resources such as the self-management programs, the prevailing reason is patients did not know they existed,” she says. “If such programs did exist, most respondents thought their doctors would have already told them about it. Providers have a responsibility to tell their patients, and may increase patient satisfaction if they do.”
These programs are becoming more widely available in the community, meaning that outlays in both time and money to the practice are minimal. In return, a physician gets patients who are more knowledgeable and more actively involved in their own care. “Most education in healthcare is the provider telling patients what they should do instead of helping patients best integrate the best set of health behaviors,” says Dr. Lorig. “We do things in the rest of our lives because we have confidence we can do them right, and they become our regular routine. We have to look at how we educate patients instead of blaming problems on them.”
Kurt Ullman is a freelance writer based in Indiana.
