Participation in Patient Self-ManagementProgramsBONNIE BRUCE, KATE LORIG, AND DIANA LAURENT

Objective. 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 ofsubjects in a geographic region where arthritis SMPs have been offered multiple times and continuously for 2 decades.Methods. Data were from osteoarthritis (OA) and rheumatoid arthritis subjects participating in the Arthritis, Rheuma-tism, and Aging Medical Information System (ARAMIS) who resided in the San Francisco (SF) Bay area who hadresponded to questions about ever participating in an SMP. Differences between participants and nonparticipants wereexamined by t-tests and chi-square tests.Results. Questions added to the Health Assessment Questionnaire were returned by 1,176 patients; 618 resided in the SFBay area. Of the SF Bay area sample, 41.9% had participated in an SMP. Small group SMPs, which had been offeredmultiple 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, 15years 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).Conclusion. 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 identifyparticipation rates in more diverse populations.

KEY WORDS. Patient self-management program; Participation.

INTRODUCTION

Conditions such as arthritis, diabetes, and cancer areamong the most prevalent chronic health problems in theUS (1,2). Arthritis affects 1 in 5 US adults and is theleading cause of disability (3). Chronic conditions rarelyresolve, often require ongoing medical care, impact theability to live independently, and permanently change aperson’s life. Traditionally, responsibility for the treat-ment and care of patients with chronic conditions has

rested largely with the physician. However, because mostpeople’s lives exist largely outside of the health care sys-tem, they must learn to self-manage their condition(s).

Over the past 2 decades, evidenced-based patient self-management programs (SMPs) have clearly demonstratedeffectiveness in increasing knowledge, helping patientsimplement skills to handle their condition(s), becomemore active partners in their health care, improve qualityof life, and in some cases reduce health care costs. It is alsowell established that these programs are effective in reduc-ing outcomes such as pain, depression, and disability (4–7). In recognition of this fact, Healthy People 2010 (8)recommends self-management education for people witharthritis and has set 13% as the target participation level.

Nevertheless, there are few published data on the par-ticipation in SMPs that are offered to general populations.The only large-scale system for self-management educa-tion is that for patients with diabetes. The Centers forDisease Control and Prevention has reported that 45% ofpersons 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 Con-trol and Prevention reported that 6–16% of individualswith arthritis had received arthritis education with an

Supported by a grant from the NIH (P01-AR-043584) tothe Arthritis, Rheumatism, and Aging Medical InformationSystem. Dr. Lorig and Ms Laurent have received royaltiesfrom The Chronic Disease Self-Management Program andThe Arthritis Helpbook: Living a Healthy Life With LongTerm Conditions.

Bonnie Bruce, DrPH, MPH, RD, Kate Lorig, DrPH, RN,Diana Laurent, MPH: Stanford University, Palo Alto, Cali-fornia.

Address correspondence to Bonnie Bruce, DrPH, MPH,RD, Senior Research Scientist, Division of Immunology &Rheumatology, Stanford University Department of Medi-cine, 1000 Welch Road, Suite 203, Palo Alto, CA 94304.E-mail: bbruce@stanford.edu.

Submitted for publication July 7, 2006; accepted in re-vised form November 30, 2006.

Arthritis & Rheumatism (Arthritis Care & Research)Vol. 57, No. 5, June 15, 2007, pp 851–854DOI 10.1002/art.22776© 2007, American College of Rheumatology

ORIGINAL ARTICLE

851

overall proportion of �11% (3), while the Arthritis Foun-dation estimated that as of 2001 only a small fraction(�2%) of people with arthritis had participated in arthritisSMPs (10).

The purpose of this study was to investigate the partic-ipation rate and participant characteristics in arthritisSMPs in a closed cohort in a geographic location wherearthritis SMPs have been offered in diverse settings, mul-tiple times, and continuously over many years. The hy-pothesis was that participation would be higher wheremultiple opportunities for participation were offered.

SUBJECTS AND METHODS

Participation data were obtained from a closed cohort ofsubjects with osteoarthritis (OA) and rheumatoid arthritis(RA) who participated in the Arthritis, Rheumatism, andAging Medical Information System (ARAMIS) study.ARAMIS is a prospective, multicenter longitudinal studythat has been collecting data for 30 years. Subjects areconsecutively enrolled by study physicians from univer-sity- and community-based clinics in North America andare followed throughout their life, until they withdraw ordie. Subjects complete the Health Assessment Question-naire (HAQ) (11) semi-annually and are not compensatedfor their participation. However, the subjects receivenewsletters that encourage participation at the same timeas they receive their HAQs. Rigorous, standardized re-search protocols are followed for data collection and qual-ity control. All returned questionnaires are reviewed forcompleteness, ambiguities, or inconsistencies. The HAQhas a �96–98% annual response rate (12). Characteristicsof OA and RA participants in ARAMIS have been shown tobe similar to descriptions of other OA and RA patientgroups, relative to age, sex, and disease duration (12).

Subjects eligible for this analysis returned the January2004 HAQ along with the additional page of questions thatasked about participation in arthritis and chronic diseaseSMPs. The additional questions asked whether the respon-dent 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 Internetchronic disease SMP. The ASMP has been offered on acontinuing basis, in diverse settings (e.g., Stanford Univer-sity, senior centers, churches, and at other local organiza-tions such as the Arthritis Foundation) in the San Fran-cisco (SF) Bay area over the past 2 decades. The CDSMPhas been offered twice yearly for 10 years, but in fewersettings. The Internet chronic disease SMP and the mailedarthritis SMP were offered only 1 time each and wereresearch studies with restricted availability, not commu-nity programs. The Internet program was offered only tothose ARAMIS respondents who met the criteria of havingInternet access and had never attended any other SMP.The study protocol and informed consent were approvedby the Stanford University Administrative Panel on Hu-man Subjects in Medical Research, and each patient pro-vided written informed consent at the time of enrollmentin ARAMIS.

The study sample consisted of a subset of ARAMISsubjects residing in the SF Bay area because of this area’slong history of offering SMPs. Subjects in the study samplewere identified by local telephone area codes. These in-cluded communities to the north of San Francisco, southto San Jose, Santa Cruz and Monterey, and east from Oak-land to Milpitas (area codes 415, 650, 408, 831, 510, and925).

The SMP participation rate was calculated as the pro-portion of SF Bay area respondents who had ever partici-pated in 1 or more SMPs. If a respondent reported partic-ipating in more than one type of program (such as a smallgroup ASMP and a CDSMP), they were counted only once.Participant characteristics were reported by frequency andproportion or mean � SD. Racial/ethnic groups were com-bined into white and nonwhite categories due to the smallsample sizes within each group. Differences between SMPparticipants and nonparticipants were assessed by t-testsand chi-square tests. Analyses were performed with SAS,version 9.1 (SAS Institute, Cary, NC) on the Windows(Microsoft, Redmond, WA) platform. Statistical signifi-cance was set at P � 0.05.

RESULTS

Response rate and participation rate. Of the 1,386HAQs mailed 1,232 were returned (an 89% HAQ responserate). Of those 1,232 returned questionnaires 1,176 sub-jects also returned the additional page of questions aboutSMP participation (an 85% response rate based on allreturned HAQs). Two-thirds (65.7%) of the 1,176 subjectshad OA, three-fourths (76.6%) were female, and the ma-jority (88.0%) were white. The average age was 68 years,and the average number of years of school attended was15. Out of this group of 1,176 subjects, 618 (52.6%) had SFBay area telephone area codes and comprised the studysample. In the study sample, 41.9% (n � 259) had partic-ipated in at least 1 SMP compared with 29.6% (n � 165) ofthe respondents outside of the SF Bay area (the rest of theUS).

Participation by program type. In the SF Bay area co-hort, small group arthritis SMPs were attended by thehighest proportion (�28%) of respondents, whereas in thegroup outside the SF Bay area, less than half that propor-tion (�12%) had ever participated in a small group SMP.Much smaller proportions of both groups had ever partic-ipated in the chronic disease and mailed programs. Ap-proximately 5% of the study subjects had enrolled in theInternet Chronic Disease SMP, compared with a �15%enrollment in the group outside the SF Bay area (Table 1).

Participant characteristics. The participant and non-participant characteristics were relatively similar. The av-erage age in both groups was �70 years old, the educationlevel was 15 years, and the majority of respondents hadOA (Table 2). The only differences were that the propor-tion of women who had ever participated in an SMP wassignificantly higher than the proportion who had not (P �

852 Bruce et al

0.05), and the proportion of whites who had ever partici-pated in an SMP was borderline statistically higher thannonparticipants (P � 0.046).

A comparison of the characteristics between the SF Bayarea study sample and those outside the SF Bay area,irrespective of program participation, revealed that therewas 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 (70versus 65 years old; P � 0.05) and were better educated (15versus 14 years of education; P � 0.05). In addition, therewas a significantly higher percentage of respondents withRA and a lower percentage of respondents with OA out-side of the SF Bay area (P � 0.05 for both).

DISCUSSION

These initial findings provide a snapshot of SMP partici-pation from a systematic investigation of program partici-pation in subjects with arthritis. More than 40% of SF Bayarea subjects had ever participated in an SMP, with thehighest proportion having participated in small group ar-thritis SMPs. The participation rate in this group is sub-stantially higher than has been reported in previous stud-ies that emanated from a population-based perspectiveand anecdotal account (3,10). Participation in SMPs is afunction of several factors, including scheduling, conve-nience, need for referral, cost, and characteristics of thetargeted groups. Because small group arthritis SMPs wereoffered multiple times in diverse settings on a continuing

basis over the past 2 decades in the SF Bay area withoutthe need for referral and at a nominal cost, it was notsurprising to have found a higher participation rate.

In addition, it was not unexpected to find that the smallgroup arthritis SMPs were attended by the highest propor-tion of subjects due to the many opportunities to partici-pate, and because this cohort consisted of subjects witharthritis. The lower participation rates for the other typesof SMPs could be reflective of the fact that they were moregenerically oriented for chronic diseases or because of thelimited opportunities for participation compared with thesmall group programs.

A limitation of these initial findings includes the sam-pling bias. This was a study of a closed cohort of subjectswith arthritis who may have been more motivated to par-ticipate in an arthritis SMP. Hence, generalizability togroups with other chronic conditions such as diabetesshould be done with caution. Also, the study group wasdemographically similar with few meaningful differencesbetween participants and nonparticipants, or geographiclocation, which may have affected results and interpreta-tion. Predominantly the study subjects were well-edu-cated, white women. Consequently, these findings may notapply to men, other ethnic groups, or younger subjects.However, because ARAMIS subjects tend to be similar todescriptions of other OA and RA patient groups, relative toage, sex, and disease duration (12), these data may beapplicable to similar groups.

Another limitation is that the data used in this studywere gathered as much as 20 years after participation in anSMP, and time frame of participation was not obtained.Accordingly, information on factors such as disability andother quality of life factors at the time of SMP participationwas unavailable. These data could have provided a betterunderstanding of factors related to program participationand further elucidate the representativeness of the groupstudied.

This study was intentionally designed to explore theextent to which people in a closed cohort have partici-pated in SMPs in a geographic region that has an ongoinghistory of participation opportunities. These results sug-gest that providing appropriate and frequent opportunitiesfor participation can help facilitate translation of researchinto practice. The results have implications for the impor-tance of offering SMPs on a continuing basis, in diverse

Table 2. Characteristics of San Francisco Bay arearespondents by self-management program participation

Everparticipated

(n � 259)

Neverparticipated

(n � 359)

Female, % 81.8 73.4*White, % 88.0 82.2†Age, mean � SD years* 69.3 � 12.1 70.6 � 11.8Education level,

mean � SD years*15.2 � 2.1 15.0 � 2.1

Rheumatoid arthritis, % 31 26Osteoarthritis, % 69 74

* P � 0.05.† P � 0.046.

Table 1. Participation in self-management program(SMP) by program type*

InsideSF Bay area

(n � 618)

OutsideSF 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)

* Values are the number (percentage). SF � San Francisco.

Table 3. Characteristics of respondents by geographiclocation (inside or outside the San Francisco [SF] Bay area)

InsideSF Bay area

(n � 618)

OutsideSF Bay area

(n � 558)

Female, % 77 79White, % 84 92*Age, mean � SD years 70.0 � 11.3 64.7 � 12.6*Education level,

mean � SD years15.1 � 2.1 14.3 � 2.1*

Rheumatoid arthritis, % 28 39*Osteoarthritis, % 72 61*

* P � 0.05.

Self-Management Program Participation 853

settings, and providing potential participants multiple op-portunities to participate.

Clearly, however, much broader community-based stud-ies with more diverse groups are needed to obtain a morecomplete picture of SMP participation. This will help in-form who is being served or underserved. Further, com-prehensive assessment of program participation that in-cludes study of correlates and determinates, potentialbarriers, and representativeness is necessary to identifygroups that need additional resources. This would help toimprove the extent of involvement of people in the man-agement of their disease, in this case, arthritis. As theburden of chronic disease continues to escalate in ouraging society, providing opportunities to participate inevidenced-based SMPs can help individuals better managetheir conditions and improve quality of life.

AUTHOR CONTRIBUTIONS

Dr. Bruce had full access to all of the data in the study and takesresponsibility for the integrity of the data and the accuracy of thedata 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.

REFERENCES

1. National Center for Chronic Disease Prevention and HealthPromotion. Chronic disease overview. Atlanta: Centers forDisease Control and Prevention; 2005. URL: http://www.cdc.gov/nccdphp/overview.htm.

2. Centers for Disease Control and Prevention. Unrealized pre-vention opportunities: reducing the health and economic bur-den of chronic disease. Atlanta: US Department of Health andHuman Services, Centers for Disease Control and Prevention;2000.

3. Centers for Disease Control and Prevention. Monitoringprogress in arthritis management: United States and 25 states,2003. MMWR Morb Mortal Wkly Rep 2005;54:484–8.

4. Lorig KR, Sobel DS, Stewart AL, Brown BW Jr, Bandura A,Ritter P, et al. Evidence suggesting that a chronic diseaseself-management program can improve health status whilereducing hospitalization: a randomized trial. Med Care 1999;37:5–14.

5. Holman H, Lorig K. Patients as partners in managing chronicdisease: partnership is a prerequisite for effective and efficienthealth care [letter]. BMJ 2000;320:526–7.

6. Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of aself-management program on patients with chronic disease.Eff Clin Pract 2001;4:256–62.

7. Lorig KR, Mazonson PD, Holman HR. Evidence suggestingthat health education for self-management in patients withchronic arthritis has sustained health benefits while reducinghealth care costs. Arthritis Rheum 1993;36:439–46.

8. Department of Health and Human Services (US). HealthyPeople 2010: understanding and improving health. URL:http://www.healthypeople.gov.

9. McKay HG, King D, Eakin EG, Seeley JR, Glasgow RE. Thediabetes network Internet-based physical activity inter-vention: a randomized pilot study. Diabetes Care 2001;24:1328–34.

10. Brady TJ, Kruger J, Helmick CG, Callahan LF, Boutaugh ML.Intervention programs for arthritis and other rheumatic dis-eases [review]. Health Educ Behav 2003;30:44–63.

11. Bruce B, Fries JF. The Health Assessment Questionnaire(HAQ). Clin Exp Rheumatol 2005;23 Suppl 39:S14–8.

12. Bruce B, Fries JF. The Arthritis, Rheumatism and Aging Med-ical Information System (ARAMIS): still young at 30 years.Clin Exp Rheumatol 2005;23 Suppl 39:S163–7.

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