Dr. Lorig and Ms Laurent have received royalties from The Chronic Disease Self-Management Program and The Arthritis Helpbook: Living a Healthy Life With Long Term Conditions.
Participation in patient self-management programs
Article first published online: 25 MAY 2007
Copyright © 2007 by the American College of Rheumatology
Arthritis Care & Research
Volume 57, Issue 5, pages 851–854, 15 June 2007
How to Cite
Bruce, B., Lorig, K. and Laurent, D. (2007), Participation in patient self-management programs. Arthritis & Rheumatism, 57: 851–854. doi: 10.1002/art.22776
- Issue published online: 25 MAY 2007
- Article first published online: 25 MAY 2007
- Manuscript Accepted: 30 NOV 2006
- Manuscript Received: 7 JUL 2006
- NIH to the Arthritis, Rheumatism, and Aging Medical Information System. Grant Number: P01-AR-043584
- Patient self-management program;
Participation in evidenced-based arthritis self-management programs (SMPs) has not been well documented. The purpose of this study was to investigate the participation rate and participant characteristics in a closed cohort of subjects in a geographic region where arthritis SMPs have been offered multiple times and continuously for 2 decades.
Data were from osteoarthritis (OA) and rheumatoid arthritis subjects participating in the Arthritis, Rheumatism, and Aging Medical Information System (ARAMIS) who resided in the San Francisco (SF) Bay area who had responded to questions about ever participating in an SMP. Differences between participants and nonparticipants were examined by t-tests and chi-square tests.
Questions added to the Health Assessment Questionnaire were returned by 1,176 patients; 618 resided in the SF Bay area. Of the SF Bay area sample, 41.9% had participated in an SMP. Small group SMPs, which had been offered multiple times, in diverse settings, continuously over the past 2 decades, were attended by the highest proportion (28%) of participants. Characteristics of participants and nonparticipants in the SF Bay area were similar (∼70 years old, 15 years of education, and the majority had OA [∼72%]). However, a higher proportion of participants were white (88% versus 82%; P = 0.046) and female (82% versus 73%; P < 0.05).
When arthritis SMPs were offered multiple times in diverse settings and continuously over many years, >40% of the cohort was reached. More research is needed with larger samples and different geographic regions to identify participation rates in more diverse populations.
Conditions such as arthritis, diabetes, and cancer are among the most prevalent chronic health problems in the US (1, 2). Arthritis affects 1 in 5 US adults and is the leading cause of disability (3). Chronic conditions rarely resolve, often require ongoing medical care, impact the ability to live independently, and permanently change a person's life. Traditionally, responsibility for the treatment and care of patients with chronic conditions has rested largely with the physician. However, because most people's lives exist largely outside of the health care system, they must learn to self-manage their condition(s).
Over the past 2 decades, evidenced-based patient self-management programs (SMPs) have clearly demonstrated effectiveness in increasing knowledge, helping patients implement skills to handle their condition(s), become more active partners in their health care, improve quality of life, and in some cases reduce health care costs. It is also well established that these programs are effective in reducing outcomes such as pain, depression, and disability (4–7). In recognition of this fact, Healthy People 2010 (8) recommends self-management education for people with arthritis and has set 13% as the target participation level.
Nevertheless, there are few published data on the participation in SMPs that are offered to general populations. The only large-scale system for self-management education is that for patients with diabetes. The Centers for Disease Control and Prevention has reported that 45% of persons with diabetes receive formal diabetes education (9). However, little of this education is evidence-based (8). In a population-based study, the Centers for Disease Control and Prevention reported that 6–16% of individuals with arthritis had received arthritis education with an overall proportion of ∼11% (3), while the Arthritis Foundation estimated that as of 2001 only a small fraction (<2%) of people with arthritis had participated in arthritis SMPs (10).
The purpose of this study was to investigate the participation rate and participant characteristics in arthritis SMPs in a closed cohort in a geographic location where arthritis SMPs have been offered in diverse settings, multiple times, and continuously over many years. The hypothesis was that participation would be higher where multiple opportunities for participation were offered.
SUBJECTS AND METHODS
Participation data were obtained from a closed cohort of subjects with osteoarthritis (OA) and rheumatoid arthritis (RA) who participated in the Arthritis, Rheumatism, and Aging Medical Information System (ARAMIS) study. ARAMIS is a prospective, multicenter longitudinal study that has been collecting data for 30 years. Subjects are consecutively enrolled by study physicians from university- and community-based clinics in North America and are followed throughout their life, until they withdraw or die. Subjects complete the Health Assessment Questionnaire (HAQ) (11) semi-annually and are not compensated for their participation. However, the subjects receive newsletters that encourage participation at the same time as they receive their HAQs. Rigorous, standardized research protocols are followed for data collection and quality control. All returned questionnaires are reviewed for completeness, ambiguities, or inconsistencies. The HAQ has a ∼96–98% annual response rate (12). Characteristics of OA and RA participants in ARAMIS have been shown to be similar to descriptions of other OA and RA patient groups, relative to age, sex, and disease duration (12).
Subjects eligible for this analysis returned the January 2004 HAQ along with the additional page of questions that asked about participation in arthritis and chronic disease SMPs. The additional questions asked whether the respondent had ever participated in 1 or more of the following: 1) a small group arthritis self-management program (ASMP); 2) a small group chronic disease self-management program (CDSMP); 3) a mailed arthritis SMP; or 4) an Internet chronic disease SMP. The ASMP has been offered on a continuing basis, in diverse settings (e.g., Stanford University, senior centers, churches, and at other local organizations such as the Arthritis Foundation) in the San Francisco (SF) Bay area over the past 2 decades. The CDSMP has been offered twice yearly for 10 years, but in fewer settings. The Internet chronic disease SMP and the mailed arthritis SMP were offered only 1 time each and were research studies with restricted availability, not community programs. The Internet program was offered only to those ARAMIS respondents who met the criteria of having Internet access and had never attended any other SMP. The study protocol and informed consent were approved by the Stanford University Administrative Panel on Human Subjects in Medical Research, and each patient provided written informed consent at the time of enrollment in ARAMIS.
The study sample consisted of a subset of ARAMIS subjects residing in the SF Bay area because of this area's long history of offering SMPs. Subjects in the study sample were identified by local telephone area codes. These included communities to the north of San Francisco, south to San Jose, Santa Cruz and Monterey, and east from Oakland to Milpitas (area codes 415, 650, 408, 831, 510, and 925).
The SMP participation rate was calculated as the proportion of SF Bay area respondents who had ever participated in 1 or more SMPs. If a respondent reported participating in more than one type of program (such as a small group ASMP and a CDSMP), they were counted only once. Participant characteristics were reported by frequency and proportion or mean ± SD. Racial/ethnic groups were combined into white and nonwhite categories due to the small sample sizes within each group. Differences between SMP participants and nonparticipants were assessed by t-tests and chi-square tests. Analyses were performed with SAS, version 9.1 (SAS Institute, Cary, NC) on the Windows (Microsoft, Redmond, WA) platform. Statistical significance was set at P < 0.05.
Response rate and participation rate.
Of the 1,386 HAQs mailed 1,232 were returned (an 89% HAQ response rate). Of those 1,232 returned questionnaires 1,176 subjects also returned the additional page of questions about SMP participation (an 85% response rate based on all returned HAQs). Two-thirds (65.7%) of the 1,176 subjects had OA, three-fourths (76.6%) were female, and the majority (88.0%) were white. The average age was 68 years, and the average number of years of school attended was 15. Out of this group of 1,176 subjects, 618 (52.6%) had SF Bay area telephone area codes and comprised the study sample. In the study sample, 41.9% (n = 259) had participated in at least 1 SMP compared with 29.6% (n = 165) of the respondents outside of the SF Bay area (the rest of the US).
Participation by program type.
In the SF Bay area cohort, small group arthritis SMPs were attended by the highest proportion (∼28%) of respondents, whereas in the group outside the SF Bay area, less than half that proportion (∼12%) had ever participated in a small group SMP. Much smaller proportions of both groups had ever participated in the chronic disease and mailed programs. Approximately 5% of the study subjects had enrolled in the Internet Chronic Disease SMP, compared with a ∼15% enrollment in the group outside the SF Bay area (Table 1).
|Inside SF Bay area (n = 618)||Outside SF Bay area (n = 558)|
|Small group arthritis (ASMP)||170 (27.5)||65 (11.7)|
|Small group chronic disease (CDSMP)||20 (3.2)||6 (1.1)|
|Internet chronic disease||32 (5.2)||86 (15.4)|
|Mailed arthritis||19 (3.1)||5 (0.9)|
The participant and nonparticipant characteristics were relatively similar. The average age in both groups was ∼70 years old, the education level was 15 years, and the majority of respondents had OA (Table 2). The only differences were that the proportion of women who had ever participated in an SMP was significantly higher than the proportion who had not (P < 0.05), and the proportion of whites who had ever participated in an SMP was borderline statistically higher than nonparticipants (P = 0.046).
|Ever participated (n = 259)||Never participated (n = 359)|
|Age, mean ± SD years*||69.3 ± 12.1||70.6 ± 11.8|
|Education level, mean ± SD years*||15.2 ± 2.1||15.0 ± 2.1|
|Rheumatoid arthritis, %||31||26|
A comparison of the characteristics between the SF Bay area study sample and those outside the SF Bay area, irrespective of program participation, revealed that there was a significantly lower proportion of white respondents (84% versus 92%; P < 0.05) in the study sample (Table 3). Also, SF Bay area subjects were significantly older (70 versus 65 years old; P < 0.05) and were better educated (15 versus 14 years of education; P < 0.05). In addition, there was a significantly higher percentage of respondents with RA and a lower percentage of respondents with OA outside of the SF Bay area (P < 0.05 for both).
|Inside SF Bay area (n = 618)||Outside SF Bay area (n = 558)|
|Age, mean ± SD years||70.0 ± 11.3||64.7 ± 12.6*|
|Education level, mean ± SD years||15.1 ± 2.1||14.3 ± 2.1*|
|Rheumatoid arthritis, %||28||39*|
These initial findings provide a snapshot of SMP participation from a systematic investigation of program participation in subjects with arthritis. More than 40% of SF Bay area subjects had ever participated in an SMP, with the highest proportion having participated in small group arthritis SMPs. The participation rate in this group is substantially higher than has been reported in previous studies that emanated from a population-based perspective and anecdotal account (3, 10). Participation in SMPs is a function of several factors, including scheduling, convenience, need for referral, cost, and characteristics of the targeted groups. Because small group arthritis SMPs were offered multiple times in diverse settings on a continuing basis over the past 2 decades in the SF Bay area without the need for referral and at a nominal cost, it was not surprising to have found a higher participation rate.
In addition, it was not unexpected to find that the small group arthritis SMPs were attended by the highest proportion of subjects due to the many opportunities to participate, and because this cohort consisted of subjects with arthritis. The lower participation rates for the other types of SMPs could be reflective of the fact that they were more generically oriented for chronic diseases or because of the limited opportunities for participation compared with the small group programs.
A limitation of these initial findings includes the sampling bias. This was a study of a closed cohort of subjects with arthritis who may have been more motivated to participate in an arthritis SMP. Hence, generalizability to groups with other chronic conditions such as diabetes should be done with caution. Also, the study group was demographically similar with few meaningful differences between participants and nonparticipants, or geographic location, which may have affected results and interpretation. Predominantly the study subjects were well-educated, white women. Consequently, these findings may not apply to men, other ethnic groups, or younger subjects. However, because ARAMIS subjects tend to be similar to descriptions of other OA and RA patient groups, relative to age, sex, and disease duration (12), these data may be applicable to similar groups.
Another limitation is that the data used in this study were gathered as much as 20 years after participation in an SMP, and time frame of participation was not obtained. Accordingly, information on factors such as disability and other quality of life factors at the time of SMP participation was unavailable. These data could have provided a better understanding of factors related to program participation and further elucidate the representativeness of the group studied.
This study was intentionally designed to explore the extent to which people in a closed cohort have participated in SMPs in a geographic region that has an ongoing history of participation opportunities. These results suggest that providing appropriate and frequent opportunities for participation can help facilitate translation of research into practice. The results have implications for the importance of offering SMPs on a continuing basis, in diverse settings, and providing potential participants multiple opportunities to participate.
Clearly, however, much broader community-based studies with more diverse groups are needed to obtain a more complete picture of SMP participation. This will help inform who is being served or underserved. Further, comprehensive assessment of program participation that includes study of correlates and determinates, potential barriers, and representativeness is necessary to identify groups that need additional resources. This would help to improve the extent of involvement of people in the management of their disease, in this case, arthritis. As the burden of chronic disease continues to escalate in our aging society, providing opportunities to participate in evidenced-based SMPs can help individuals better manage their conditions and improve quality of life.
Dr. Bruce had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study design. Bruce, Lorig, Laurent.
Acquisition of data. Lorig, Laurent.
Analysis and interpretation of data. Bruce, Lorig, Laurent.
Manuscript preparation. Bruce, Lorig, Laurent.
Statistical analysis. Bruce, Lorig.
- 1National Center for Chronic Disease Prevention and Health Promotion. Chronic disease overview. Atlanta: Centers for Disease Control and Prevention; 2005. URL: http://www.cdc.gov/nccdphp/overview.htm.
- 2Centers for Disease Control and Prevention. Unrealized prevention opportunities: reducing the health and economic burden of chronic disease. Atlanta: US Department of Health and Human Services, Centers for Disease Control and Prevention; 2000.
- 3Centers for Disease Control and Prevention. Monitoring progress in arthritis management: United States and 25 states, 2003. MMWR Morb Mortal Wkly Rep 2005; 54: 484–8.
- 8Department of Health and Human Services (US). Healthy People 2010: understanding and improving health. URL: http://www.healthypeople.gov.