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.”
