Arthritis Self-Management Lags Despite Wide Promotion

Several U.S. public health groups have recently made self-management training for patients with arthritis a priority. But clinicians resist this, despite an evidence-based track record that goes back more than 30 years.

In essence, arthritis self-management consists of arthritis patients using exercise, injury prevention strategies, weight management through healthful eating, disease education, meditation, and other supportive therapies to ease their pain and increase their function.

Both government and rheumatology organizations have been enthusiastic in their support for these measures, as shown by the following:

• The Centers for Disease Control and Prevention has formally supported arthritis self-management training (as well as similar training for patients with other chronic diseases). In addition, the CDC’s arthritis program says that one of its main short-term goals is to "improve and increase self-management attitudes and behaviors among persons with arthritis. ... Without doubt, self-management is a core issue in public health," said Dr. Patience White, a rheumatologist and chief public health officer of the Arthritis Foundation in Atlanta.

• The U.S. Administration on Aging received cash support from the 2009 American Recovery and Reinvestment Act. With that stimulus money, the AoA handed out $27 million in grants to 45 states, Puerto Rico, and the District of Columbia last year to deliver self-management training programs to patients with chronic diseases including those with osteoarthritis (OA) or rheumatoid arthritis (RA).

• In the 2010 report "A National Public Health Agenda for Osteoarthritis," jointly issued by the Arthritis Foundation and the CDC, the first recommendation for action in the report’s 10-item plan is: "Self-management education should be expanded as a community-based intervention for people with symptomatic OA." The American College of Rheumatology has also endorsed self-management training for OA patients in the society’s OA management recommendations (Arthritis Rheum. 2000;43:1905-15), and the Arthritis Foundation has promoted self-management as a key element in managing patients with RA.

• Healthy People 2020, a set of public health targets released in December 2010 by the Department of Health and Human Services, said that one goal for patients with arthritis is to "increase the proportion of adults with doctor-diagnosed arthritis who have had effective, evidence-based arthritis education as an integral part of the management of their condition."

In short, self-management – with its safety and proven modest efficacy – has emerged as an attractive complement to the medical approach for dealing with arthritis.

Data Support Self-Management’s Efficacy

Kate Lorig, Dr.P.H., noted that "we give patients a lot of tools to use so that they can do the things they need to do with less pain."

"What we find is that patients who take the course have statistically significantly less pain," added Dr. Lorig, professor of medicine and director of the Patient Education Research Center at Stanford (Calif.) University in Palo Alto, in an interview. "They have a small to moderate reduction in pain that is similar to what they get from NSAIDs. ... We see people able to do things that they couldn’t before, related to improvements in mobility and depression, and we see improvements in their quality of life."

Dr. Lorig has led a group at Stanford that began developing and testing an arthritis-oriented self-management program in the late 1970s (Arthritis Rheum. 1985;28:680-5). Subsequently the same group developed a more generic chronic disease program (Arthritis Rheum. 2005;53:950-7), and arthritis programs available by mail (Arthritis Rheum. 2009;61:867-75) and over the Internet (Arthritis Rheum. 2008;59:1009-17).

"The individual improvement for each patient can be rather small, but the cost saving [of promoting wide use of self-management training] is high because of the large number of patients," said Dr. White. In addition, although the overall effect size may be small, for a subset of patients the effect is "life changing," she added.

Clinicians’ Indifference

But despite these positive assessments and public health promotions, self-management training for patients with OA or RA remains neglected and unused. Experts widely agree that a scant fraction of U.S. arthritis patients have received self-management training.

According to the Arthritis Foundation’s Dr. White, currently 60,000 U.S. arthritis patients undergo self-management training each year, a number dwarfed by the roughly 50 million Americans who have some form of arthritis. "Very few are in the program, even when it gets megabucks from the government," she said.

The best known and most thoroughly-studied self-management training course for patients with arthritis is the Arthritis Self-Management Program developed by Dr. Lorig and her associates at Stanford University and licensed by Stanford to training sites. The Stanford group also subsequently developed the similar Chronic Disease Self-Management Program. The Stanford programs are the most widely used, and rightly so, said Maura D. Iversen, Sc.D., professor and chairman of the department of physical therapy at Northeastern University in Boston.

The Stanford arthritis program "was the basis for the Arthritis Foundation’s self-help program in the 1980s, and thus many health professionals and patient volunteers used it," Dr. Iversen said in an interview. Writing in a review of self-management last year, Dr. Iversen and her associates said that "self-management programs are now acknowledged as a key element of quality care" for patients with OA, RA, and other chronic diseases. The unaddressed issues today include whether the benefits from self-management training extend long term, and whether any patient attributes are linked with better outcomes following training, they wrote (Ann. Rheum. Dis. 2010;69:955-63).

"There are many ways for patients to get self-help, but from the standpoint of having the data, [the Stanford programs] are the best for both arthritis and chronic disease," said Dr. White.

The Stanford program "is the most popular. It has been well studied and popularized by the Arthritis Foundation and the CDC," said Dr. Daniel H. Solomon, a rheumatologist at Brigham and Women’s Hospital in Boston. But that "most popular" characterization is relative: The program’s popularity drops precipitously inside the offices of many rheumatologists and primary care physicians. Major issues seem to be skepticism about efficacy; questions about the need for formal programs; and a lack of awareness about self-management, time to make a referral, and knowledge about where to refer.

"I doubt many rheumatologists regularly refer patients to such programs. It is hard to argue with such programs, but few rheumatologists view them as beneficial. They are clearly nontoxic, but how beneficial they are can be debated," said Dr. Solomon. Several years ago, he headed a controlled study with 113 patients with OA, RA, or fibromyalgia that failed to find a significant benefit from the arthritis self-management program (J. Rheumatol. 2002;29:362-8). He also coauthored a meta-analysis of 17 other controlled trials of the same program, and found that self-management classes led to small reductions in pain and disability (Arthritis Rheum. 2003;48: 2207-13).

"A self-management course is just one of several tools to promote patient coping," said Dr. Nortin M. Hadler, a rheumatologist and professor of medicine at the University of North Carolina at Chapel Hill. "I believe that almost all rheumatologists are aware that an important part of treating regional joint pain is to have patients exercise and meet with peer groups, but the patient doesn’t need a structured Arthritis Foundation program. They can go the aerobics classes, the YMCA, or a health club."

"As a group, rheumatologists don’t refer their patients to self-management," said rheumatologist Dr. Halsted R. Holman, the Guggenheim Professor of Medicine Emeritus at Stanford and a codeveloper with Dr. Lorig of the Stanford self-management program. In many cases when a rheumatologist or other physician makes the referral, the patient has a hard time finding a nearby program or a program at a convenient time. "It’s mainly access issues," he said.

Another rheumatologist who collaborated on developing the Stanford program agreed. "There are about 7,000 classes given a year in the United States, but the country is big and just because there is a class in a patient’s area doesn’t mean it will be convenient," said Dr. James F. Fries, also a rheumatologist and professor emeritus at Stanford. In addition, "the referral mode has always been lousy." The growing availability of self-management training via the Internet may address the convenience issues and broaden patient uptake, he said in an interview.

Hurdles to Referral

"I’ve never felt any hostility from rheumatologists, and the American College of Rheumatology has never been less than 100% supportive," Dr. Lorig said. "We don’t get a lot of referrals from rheumatologists in most places, but I don’t think it’s the rheumatologists’ fault. We make it exceedingly difficult to refer."

In general, physicians don’t know about self-management programs in their communities – where they’re offered and when – because "the programs have never been closely linked to the medical system. "We have 1,000 license holders [groups that have purchased a license from Stanford to hold arthritis or chronic disease self-management classes] and more than 3,000 trainers," but despite that, doctors don’t know where and when programs are offered. "We all recognize this is a huge problem. We’re now big enough that a national, central referral source is possible, and we will hopefully have one within the next year," she said.

"We also know from our research that people with arthritis who receive a referral or recommendation from their doctor are 18 times more likely to attend a self-management education program," said Teresa J. Brady, Ph.D., a senior behavioral scientist in the CDC’s arthritis program, adding that the No. 1 reason why patients don’t attend a program is that they do not know it exists, and they believe that if it did exist, they would have heard about it from their physician. "As a consequence, we at the CDC’s arthritis program have begun pilot testing a marketing strategy to help health care providers know when and where in their community patients can take training programs."

In recent years, the ways in which patients can take courses has significantly broadened, moving beyond the traditional small-class format to also include courses by mail and the Internet. The National Council on Aging (NCoA) is the technical advisor to the AoA’s grant program for chronic disease self-management training. The NCoA is now developing a Web site where patients and physicians can find all the classes offered in their communities, but Wendy Zenker, vice president of the NCoA’s benefits access group, said she could not provide a target date when the Web site will become operational.

The Arthritis Foundation’s Dr. White agreed that a low referral rate by physicians is a major problem. In general, physicians "don’t refer enough to community services in any form," she said. To help address this, the Arthritis Foundation has recently been working with the American College of Physicians to alert internal medicine physicians about the arthritis self-management program. Yet another issue is the time commitment (2.5 hours a week for 6 weeks) for patients who take a class. "The majority of people don’t complete it," Dr. White said. "The issue is: How do we get people to do it? We don’t have that magic bullet yet."

Dr. White, Dr. Iverson, Dr. Solomon, Dr. Hadler, and Dr. Brady said that they had no disclosures. Dr. Lorig, Dr. Holman, and Dr. Fries said that they receive royalties from the licensing of the Stanford self-management programs and from sales of the teaching texts.

Several U.S. public health groups have recently made self-management training for patients with arthritis a priority. But clinicians resist this, despite an evidence-based track record that goes back more than 30 years.

In essence, arthritis self-management consists of arthritis patients using exercise, injury prevention strategies, weight management through healthful eating, disease education, meditation, and other supportive therapies to ease their pain and increase their function.

Both government and rheumatology organizations have been enthusiastic in their support for these measures, as shown by the following:

• The Centers for Disease Control and Prevention has formally supported arthritis self-management training (as well as similar training for patients with other chronic diseases). In addition, the CDC’s arthritis program says that one of its main short-term goals is to "improve and increase self-management attitudes and behaviors among persons with arthritis. ... Without doubt, self-management is a core issue in public health," said Dr. Patience White, a rheumatologist and chief public health officer of the Arthritis Foundation in Atlanta.

• The U.S. Administration on Aging received cash support from the 2009 American Recovery and Reinvestment Act. With that stimulus money, the AoA handed out $27 million in grants to 45 states, Puerto Rico, and the District of Columbia last year to deliver self-management training programs to patients with chronic diseases including those with osteoarthritis (OA) or rheumatoid arthritis (RA).

• In the 2010 report "A National Public Health Agenda for Osteoarthritis," jointly issued by the Arthritis Foundation and the CDC, the first recommendation for action in the report’s 10-item plan is: "Self-management education should be expanded as a community-based intervention for people with symptomatic OA." The American College of Rheumatology has also endorsed self-management training for OA patients in the society’s OA management recommendations (Arthritis Rheum. 2000;43:1905-15), and the Arthritis Foundation has promoted self-management as a key element in managing patients with RA.

• Healthy People 2020, a set of public health targets released in December 2010 by the Department of Health and Human Services, said that one goal for patients with arthritis is to "increase the proportion of adults with doctor-diagnosed arthritis who have had effective, evidence-based arthritis education as an integral part of the management of their condition."

In short, self-management – with its safety and proven modest efficacy – has emerged as an attractive complement to the medical approach for dealing with arthritis.

Data Support Self-Management’s Efficacy

Kate Lorig, Dr.P.H., noted that "we give patients a lot of tools to use so that they can do the things they need to do with less pain."

"What we find is that patients who take the course have statistically significantly less pain," added Dr. Lorig, professor of medicine and director of the Patient Education Research Center at Stanford (Calif.) University in Palo Alto, in an interview. "They have a small to moderate reduction in pain that is similar to what they get from NSAIDs. ... We see people able to do things that they couldn’t before, related to improvements in mobility and depression, and we see improvements in their quality of life."

Dr. Lorig has led a group at Stanford that began developing and testing an arthritis-oriented self-management program in the late 1970s (Arthritis Rheum. 1985;28:680-5). Subsequently the same group developed a more generic chronic disease program (Arthritis Rheum. 2005;53:950-7), and arthritis programs available by mail (Arthritis Rheum. 2009;61:867-75) and over the Internet (Arthritis Rheum. 2008;59:1009-17).

"The individual improvement for each patient can be rather small, but the cost saving [of promoting wide use of self-management training] is high because of the large number of patients," said Dr. White. In addition, although the overall effect size may be small, for a subset of patients the effect is "life changing," she added.

Clinicians’ Indifference

But despite these positive assessments and public health promotions, self-management training for patients with OA or RA remains neglected and unused. Experts widely agree that a scant fraction of U.S. arthritis patients have received self-management training.

According to the Arthritis Foundation’s Dr. White, currently 60,000 U.S. arthritis patients undergo self-management training each year, a number dwarfed by the roughly 50 million Americans who have some form of arthritis. "Very few are in the program, even when it gets megabucks from the government," she said.

The best known and most thoroughly-studied self-management training course for patients with arthritis is the Arthritis Self-Management Program developed by Dr. Lorig and her associates at Stanford University and licensed by Stanford to training sites. The Stanford group also subsequently developed the similar Chronic Disease Self-Management Program. The Stanford programs are the most widely used, and rightly so, said Maura D. Iversen, Sc.D., professor and chairman of the department of physical therapy at Northeastern University in Boston.

The Stanford arthritis program "was the basis for the Arthritis Foundation’s self-help program in the 1980s, and thus many health professionals and patient volunteers used it," Dr. Iversen said in an interview. Writing in a review of self-management last year, Dr. Iversen and her associates said that "self-management programs are now acknowledged as a key element of quality care" for patients with OA, RA, and other chronic diseases. The unaddressed issues today include whether the benefits from self-management training extend long term, and whether any patient attributes are linked with better outcomes following training, they wrote (Ann. Rheum. Dis. 2010;69:955-63).

"There are many ways for patients to get self-help, but from the standpoint of having the data, [the Stanford programs] are the best for both arthritis and chronic disease," said Dr. White.

The Stanford program "is the most popular. It has been well studied and popularized by the Arthritis Foundation and the CDC," said Dr. Daniel H. Solomon, a rheumatologist at Brigham and Women’s Hospital in Boston. But that "most popular" characterization is relative: The program’s popularity drops precipitously inside the offices of many rheumatologists and primary care physicians. Major issues seem to be skepticism about efficacy; questions about the need for formal programs; and a lack of awareness about self-management, time to make a referral, and knowledge about where to refer.

"I doubt many rheumatologists regularly refer patients to such programs. It is hard to argue with such programs, but few rheumatologists view them as beneficial. They are clearly nontoxic, but how beneficial they are can be debated," said Dr. Solomon. Several years ago, he headed a controlled study with 113 patients with OA, RA, or fibromyalgia that failed to find a significant benefit from the arthritis self-management program (J. Rheumatol. 2002;29:362-8). He also coauthored a meta-analysis of 17 other controlled trials of the same program, and found that self-management classes led to small reductions in pain and disability (Arthritis Rheum. 2003;48: 2207-13).

"A self-management course is just one of several tools to promote patient coping," said Dr. Nortin M. Hadler, a rheumatologist and professor of medicine at the University of North Carolina at Chapel Hill. "I believe that almost all rheumatologists are aware that an important part of treating regional joint pain is to have patients exercise and meet with peer groups, but the patient doesn’t need a structured Arthritis Foundation program. They can go the aerobics classes, the YMCA, or a health club."

"As a group, rheumatologists don’t refer their patients to self-management," said rheumatologist Dr. Halsted R. Holman, the Guggenheim Professor of Medicine Emeritus at Stanford and a codeveloper with Dr. Lorig of the Stanford self-management program. In many cases when a rheumatologist or other physician makes the referral, the patient has a hard time finding a nearby program or a program at a convenient time. "It’s mainly access issues," he said.

Another rheumatologist who collaborated on developing the Stanford program agreed. "There are about 7,000 classes given a year in the United States, but the country is big and just because there is a class in a patient’s area doesn’t mean it will be convenient," said Dr. James F. Fries, also a rheumatologist and professor emeritus at Stanford. In addition, "the referral mode has always been lousy." The growing availability of self-management training via the Internet may address the convenience issues and broaden patient uptake, he said in an interview.

Hurdles to Referral

"I’ve never felt any hostility from rheumatologists, and the American College of Rheumatology has never been less than 100% supportive," Dr. Lorig said. "We don’t get a lot of referrals from rheumatologists in most places, but I don’t think it’s the rheumatologists’ fault. We make it exceedingly difficult to refer."

In general, physicians don’t know about self-management programs in their communities – where they’re offered and when – because "the programs have never been closely linked to the medical system. "We have 1,000 license holders [groups that have purchased a license from Stanford to hold arthritis or chronic disease self-management classes] and more than 3,000 trainers," but despite that, doctors don’t know where and when programs are offered. "We all recognize this is a huge problem. We’re now big enough that a national, central referral source is possible, and we will hopefully have one within the next year," she said.

"We also know from our research that people with arthritis who receive a referral or recommendation from their doctor are 18 times more likely to attend a self-management education program," said Teresa J. Brady, Ph.D., a senior behavioral scientist in the CDC’s arthritis program, adding that the No. 1 reason why patients don’t attend a program is that they do not know it exists, and they believe that if it did exist, they would have heard about it from their physician. "As a consequence, we at the CDC’s arthritis program have begun pilot testing a marketing strategy to help health care providers know when and where in their community patients can take training programs."

In recent years, the ways in which patients can take courses has significantly broadened, moving beyond the traditional small-class format to also include courses by mail and the Internet. The National Council on Aging (NCoA) is the technical advisor to the AoA’s grant program for chronic disease self-management training. The NCoA is now developing a Web site where patients and physicians can find all the classes offered in their communities, but Wendy Zenker, vice president of the NCoA’s benefits access group, said she could not provide a target date when the Web site will become operational.

The Arthritis Foundation’s Dr. White agreed that a low referral rate by physicians is a major problem. In general, physicians "don’t refer enough to community services in any form," she said. To help address this, the Arthritis Foundation has recently been working with the American College of Physicians to alert internal medicine physicians about the arthritis self-management program. Yet another issue is the time commitment (2.5 hours a week for 6 weeks) for patients who take a class. "The majority of people don’t complete it," Dr. White said. "The issue is: How do we get people to do it? We don’t have that magic bullet yet."

Dr. White, Dr. Iverson, Dr. Solomon, Dr. Hadler, and Dr. Brady said that they had no disclosures. Dr. Lorig, Dr. Holman, and Dr. Fries said that they receive royalties from the licensing of the Stanford self-management programs and from sales of the teaching texts.

Several U.S. public health groups have recently made self-management training for patients with arthritis a priority. But clinicians resist this, despite an evidence-based track record that goes back more than 30 years.

In essence, arthritis self-management consists of arthritis patients using exercise, injury prevention strategies, weight management through healthful eating, disease education, meditation, and other supportive therapies to ease their pain and increase their function.

Both government and rheumatology organizations have been enthusiastic in their support for these measures, as shown by the following:

• The Centers for Disease Control and Prevention has formally supported arthritis self-management training (as well as similar training for patients with other chronic diseases). In addition, the CDC’s arthritis program says that one of its main short-term goals is to "improve and increase self-management attitudes and behaviors among persons with arthritis. ... Without doubt, self-management is a core issue in public health," said Dr. Patience White, a rheumatologist and chief public health officer of the Arthritis Foundation in Atlanta.

• The U.S. Administration on Aging received cash support from the 2009 American Recovery and Reinvestment Act. With that stimulus money, the AoA handed out $27 million in grants to 45 states, Puerto Rico, and the District of Columbia last year to deliver self-management training programs to patients with chronic diseases including those with osteoarthritis (OA) or rheumatoid arthritis (RA).

• In the 2010 report "A National Public Health Agenda for Osteoarthritis," jointly issued by the Arthritis Foundation and the CDC, the first recommendation for action in the report’s 10-item plan is: "Self-management education should be expanded as a community-based intervention for people with symptomatic OA." The American College of Rheumatology has also endorsed self-management training for OA patients in the society’s OA management recommendations (Arthritis Rheum. 2000;43:1905-15), and the Arthritis Foundation has promoted self-management as a key element in managing patients with RA.

• Healthy People 2020, a set of public health targets released in December 2010 by the Department of Health and Human Services, said that one goal for patients with arthritis is to "increase the proportion of adults with doctor-diagnosed arthritis who have had effective, evidence-based arthritis education as an integral part of the management of their condition."

In short, self-management – with its safety and proven modest efficacy – has emerged as an attractive complement to the medical approach for dealing with arthritis.

Data Support Self-Management’s Efficacy

Kate Lorig, Dr.P.H., noted that "we give patients a lot of tools to use so that they can do the things they need to do with less pain."

"What we find is that patients who take the course have statistically significantly less pain," added Dr. Lorig, professor of medicine and director of the Patient Education Research Center at Stanford (Calif.) University in Palo Alto, in an interview. "They have a small to moderate reduction in pain that is similar to what they get from NSAIDs. ... We see people able to do things that they couldn’t before, related to improvements in mobility and depression, and we see improvements in their quality of life."

Dr. Lorig has led a group at Stanford that began developing and testing an arthritis-oriented self-management program in the late 1970s (Arthritis Rheum. 1985;28:680-5). Subsequently the same group developed a more generic chronic disease program (Arthritis Rheum. 2005;53:950-7), and arthritis programs available by mail (Arthritis Rheum. 2009;61:867-75) and over the Internet (Arthritis Rheum. 2008;59:1009-17).

"The individual improvement for each patient can be rather small, but the cost saving [of promoting wide use of self-management training] is high because of the large number of patients," said Dr. White. In addition, although the overall effect size may be small, for a subset of patients the effect is "life changing," she added.

Clinicians’ Indifference

But despite these positive assessments and public health promotions, self-management training for patients with OA or RA remains neglected and unused. Experts widely agree that a scant fraction of U.S. arthritis patients have received self-management training.

According to the Arthritis Foundation’s Dr. White, currently 60,000 U.S. arthritis patients undergo self-management training each year, a number dwarfed by the roughly 50 million Americans who have some form of arthritis. "Very few are in the program, even when it gets megabucks from the government," she said.

The best known and most thoroughly-studied self-management training course for patients with arthritis is the Arthritis Self-Management Program developed by Dr. Lorig and her associates at Stanford University and licensed by Stanford to training sites. The Stanford group also subsequently developed the similar Chronic Disease Self-Management Program. The Stanford programs are the most widely used, and rightly so, said Maura D. Iversen, Sc.D., professor and chairman of the department of physical therapy at Northeastern University in Boston.

The Stanford arthritis program "was the basis for the Arthritis Foundation’s self-help program in the 1980s, and thus many health professionals and patient volunteers used it," Dr. Iversen said in an interview. Writing in a review of self-management last year, Dr. Iversen and her associates said that "self-management programs are now acknowledged as a key element of quality care" for patients with OA, RA, and other chronic diseases. The unaddressed issues today include whether the benefits from self-management training extend long term, and whether any patient attributes are linked with better outcomes following training, they wrote (Ann. Rheum. Dis. 2010;69:955-63).

"There are many ways for patients to get self-help, but from the standpoint of having the data, [the Stanford programs] are the best for both arthritis and chronic disease," said Dr. White.

The Stanford program "is the most popular. It has been well studied and popularized by the Arthritis Foundation and the CDC," said Dr. Daniel H. Solomon, a rheumatologist at Brigham and Women’s Hospital in Boston. But that "most popular" characterization is relative: The program’s popularity drops precipitously inside the offices of many rheumatologists and primary care physicians. Major issues seem to be skepticism about efficacy; questions about the need for formal programs; and a lack of awareness about self-management, time to make a referral, and knowledge about where to refer.

"I doubt many rheumatologists regularly refer patients to such programs. It is hard to argue with such programs, but few rheumatologists view them as beneficial. They are clearly nontoxic, but how beneficial they are can be debated," said Dr. Solomon. Several years ago, he headed a controlled study with 113 patients with OA, RA, or fibromyalgia that failed to find a significant benefit from the arthritis self-management program (J. Rheumatol. 2002;29:362-8). He also coauthored a meta-analysis of 17 other controlled trials of the same program, and found that self-management classes led to small reductions in pain and disability (Arthritis Rheum. 2003;48: 2207-13).

"A self-management course is just one of several tools to promote patient coping," said Dr. Nortin M. Hadler, a rheumatologist and professor of medicine at the University of North Carolina at Chapel Hill. "I believe that almost all rheumatologists are aware that an important part of treating regional joint pain is to have patients exercise and meet with peer groups, but the patient doesn’t need a structured Arthritis Foundation program. They can go the aerobics classes, the YMCA, or a health club."

"As a group, rheumatologists don’t refer their patients to self-management," said rheumatologist Dr. Halsted R. Holman, the Guggenheim Professor of Medicine Emeritus at Stanford and a codeveloper with Dr. Lorig of the Stanford self-management program. In many cases when a rheumatologist or other physician makes the referral, the patient has a hard time finding a nearby program or a program at a convenient time. "It’s mainly access issues," he said.

Another rheumatologist who collaborated on developing the Stanford program agreed. "There are about 7,000 classes given a year in the United States, but the country is big and just because there is a class in a patient’s area doesn’t mean it will be convenient," said Dr. James F. Fries, also a rheumatologist and professor emeritus at Stanford. In addition, "the referral mode has always been lousy." The growing availability of self-management training via the Internet may address the convenience issues and broaden patient uptake, he said in an interview.

Hurdles to Referral

"I’ve never felt any hostility from rheumatologists, and the American College of Rheumatology has never been less than 100% supportive," Dr. Lorig said. "We don’t get a lot of referrals from rheumatologists in most places, but I don’t think it’s the rheumatologists’ fault. We make it exceedingly difficult to refer."

In general, physicians don’t know about self-management programs in their communities – where they’re offered and when – because "the programs have never been closely linked to the medical system. "We have 1,000 license holders [groups that have purchased a license from Stanford to hold arthritis or chronic disease self-management classes] and more than 3,000 trainers," but despite that, doctors don’t know where and when programs are offered. "We all recognize this is a huge problem. We’re now big enough that a national, central referral source is possible, and we will hopefully have one within the next year," she said.

"We also know from our research that people with arthritis who receive a referral or recommendation from their doctor are 18 times more likely to attend a self-management education program," said Teresa J. Brady, Ph.D., a senior behavioral scientist in the CDC’s arthritis program, adding that the No. 1 reason why patients don’t attend a program is that they do not know it exists, and they believe that if it did exist, they would have heard about it from their physician. "As a consequence, we at the CDC’s arthritis program have begun pilot testing a marketing strategy to help health care providers know when and where in their community patients can take training programs."

In recent years, the ways in which patients can take courses has significantly broadened, moving beyond the traditional small-class format to also include courses by mail and the Internet. The National Council on Aging (NCoA) is the technical advisor to the AoA’s grant program for chronic disease self-management training. The NCoA is now developing a Web site where patients and physicians can find all the classes offered in their communities, but Wendy Zenker, vice president of the NCoA’s benefits access group, said she could not provide a target date when the Web site will become operational.

The Arthritis Foundation’s Dr. White agreed that a low referral rate by physicians is a major problem. In general, physicians "don’t refer enough to community services in any form," she said. To help address this, the Arthritis Foundation has recently been working with the American College of Physicians to alert internal medicine physicians about the arthritis self-management program. Yet another issue is the time commitment (2.5 hours a week for 6 weeks) for patients who take a class. "The majority of people don’t complete it," Dr. White said. "The issue is: How do we get people to do it? We don’t have that magic bullet yet."

Dr. White, Dr. Iverson, Dr. Solomon, Dr. Hadler, and Dr. Brady said that they had no disclosures. Dr. Lorig, Dr. Holman, and Dr. Fries said that they receive royalties from the licensing of the Stanford self-management programs and from sales of the teaching texts.