Arthritis Restricts Volunteer Participation:Prevalence and Correlates of Volunteer StatusAmong Adults With ArthritisKRISTINA A. THEIS,1 LOUISE MURPHY,1 JENNIFER M. HOOTMAN,1 CHARLES G. HELMICK,1 AND
JEFFREY J. SACKS2
Objective. To estimate, among adults ages >45 years with arthritis, the prevalence and correlates of 1) volunteering,2) arthritis-attributable restrictions among volunteers, and 3) arthritis as the main barrier to volunteering (AMBV) amongnon-volunteers.Methods. Data were from the 2005–2006 Arthritis Conditions Health Effects Survey, a cross-sectional random-digit–dialed national telephone survey of noninstitutionalized US adults ages >45 years with self-reported, doctor-diagnosedarthritis. Respondents (n � 1,793; weighted population 37.7 million) were asked if they currently volunteer (work outsidethe home without pay). Volunteers were asked if arthritis affects their amount or type of volunteering (arthritis-attributable volunteer limitation [AAVL]). Non-volunteers were asked if arthritis is the main reason they do not volunteer(AMBV). Univariable and multivariable-adjusted logistic regression analyses were performed to estimate associationsbetween potential correlates and each outcome.Results. One-third of the respondents reported volunteering. Among volunteers, 41% (4.9 million) reported AAVL.Among non-volunteers, 27% (6.8 million) reported AMBV. Fair/poor self-rated health was significantly associated withless volunteering (multivariable-adjusted odds ratio [OR] 0.5, 95% confidence interval [95% CI] 0.4–0.8) and greaterAAVL (multivariable-adjusted OR 2.1, 95% CI 1.1–4.0) and AMBV (multivariable-adjusted OR 1.8, 95% CI 1.2–2.7). Poorphysical function was the most strongly associated correlate of both AAVL and AMBV (multivariable-adjusted ORs 8.0and 4.3, respectively).Conclusion. Volunteering is an important role with individual and societal benefits, but almost 12 million adults witharthritis are limited or do not participate in volunteering due to arthritis. Individuals with restrictions in volunteeringreported a substantial burden of poor physical function and may benefit from effective, underused interventions designedto improve physical function, delay disability, and enhance arthritis self-management.
INTRODUCTION
Volunteers make a substantial economic contribution tosociety. In 2000, US volunteer hours were estimated to
correspond to $239 billion (1), and in 2002 volunteer out-put was estimated to equal 0.8–1.3% of the gross domesticproduct (2). Volunteering is also a fulfilling personal en-deavor and, especially among older Americans, an impor-tant social role. Associations between volunteering andhigher life satisfaction as well as positive changes in phys-ical and psychological well-being have been demonstratedin longitudinal studies (3–6). Morrow-Howell et al suggestthat “volunteering may be more beneficial to older adultswith functional limitations” (7). As such, limitation in theability to volunteer due to arthritis may be an importantmeasure of participation restriction in a population al-ready vulnerable to isolation.
Volunteering is generally categorized as formal (volun-teering with or for a particular organization, e.g., coachingbaseball for one’s church) or informal (helping others whodo not live in the same household, e.g., providing freechildcare for a friend or neighbor). The Bureau of LaborStatistics, which does not track informal volunteering, re-
The findings and conclusions in this report are those ofthe authors and do not necessarily represent the officialposition of the Centers for Disease Control and Prevention.
This research was performed under an appointment to theResearch Participation Program at the CDC, administeredby the Oak Ridge Institute for Science and Education undercontract DE-AC05-06OR23100 between the US Departmentof Energy and Oak Ridge Associated Universities.
1Kristina A. Theis, MPH, Louise Murphy, PhD, Jennifer M.Hootman, PhD, Charles G. Helmick, MD: Arthritis Program,CDC, Atlanta, Georgia; 2Jeffrey J. Sacks, MD: Sue BinderConsulting, Inc., Atlanta, Georgia.
Address correspondence to Kristina A. Theis, MPH, Ar-thritis Program, Division of Adult and Community Health,CDC, 4770 Buford Highway, NE, MS-K-51, Atlanta, GA 30341.E-mail: [email protected].
Submitted for publication December 30, 2008; accepted inrevised form February 11, 2010.
ported that 27.9% of US adults ages �45 years engaged informal volunteering between September 2005 and Sep-tember 2006 (8). Another nationally representative surveyfound that 87% of adults ages �45 years volunteer (51%formal, 36% informal) (9). The Health and RetirementSurvey examined volunteering among US adults ages �55years and indicated that approximately 71% of adults inthis age group volunteer (10% formal only, 38% informalonly, 23% formal and informal) (10), including 6 in 10adults ages �75 years (11). Rozario and others advocate forexamining both formal and informal volunteering to pro-vide a “fuller picture of the social engagement of babyboomers and older adults” (9,10,12).
Women tend to volunteer at higher rates than menacross age groups, educational attainment, and other majorcharacteristics (8). Individuals ages 35–54 years are themost likely to volunteer. Married people volunteer at ahigher rate than others, and individuals with lower edu-cational attainment volunteer at lower rates than thosewith more education. Employed individuals volunteer athigher rates than those who are unemployed or not in thelabor force (8). Engagement in volunteering and other ac-tivities drops among people with poorer health, especiallyamong older adults (11).
To date, to our knowledge, no studies have focused onthe impact of arthritis on volunteering. Previous studieshave shown that people with arthritis frequently reportarthritis-attributable activity limitations (13,14) and par-ticipation restriction in important domains, e.g., socializ-ing (15), accessing transportation (16), social and leisureactivities (17,18), and getting around the community(16,19). Associations between limitations, pain, joints af-fected, and other symptoms have been inconsistent inthese studies; however, negative psychological impacts areregularly associated with arthritis (20,21). Reported limi-tations in paid work have been associated with arthritis-attributable activity limitations and functional/social/leisure limitations (22). Similar to limitations in paid work(22,23) and volunteering in general (11), we expected ar-thritis to have adverse impacts on volunteering and forthese impacts to be more pronounced among individualswith severe pain, poor physical function, and poor self-rated health.
The purpose of this study was to describe the impact ofarthritis on volunteering among adults ages �45 yearswith arthritis by estimating the prevalence and correlatesof 1) volunteering, 2) arthritis-attributable restrictions inthe type or amount of volunteering among adults whovolunteer, and 3) arthritis as the main barrier to volunteer-ing (AMBV) among non-volunteers.
MATERIALS AND METHODS
Data source. Study data were obtained from the Arthri-tis Conditions Health Effects Survey (ACHES). ACHESwas a cross-sectional random-digit–dialed telephonesurvey of civilian, noninstitutionalized US adults ages�45 years with self-reported, doctor-diagnosed arthritis(n � 1,793) (24,25) and was designed to be representativeof this population (the ACHES questionnaire is availableonline at: http://www.cdc.gov/arthritis/data_statistics/faqs/data_sources.htm#10). Participants were identified as
having arthritis by answering “yes” to: “Have you everbeen told by a doctor or other health professional that youhave some form of arthritis, rheumatoid arthritis, gout,lupus, or fibromyalgia?”
ACHES was based on a complex sampling scheme.Study protocol required all age-eligible participants ateach residential telephone number to be screened for ar-thritis eligibility. Respondents with arthritis were theninterviewed by trained interviewers in English (or Span-ish, as needed) between June 2005 and April 2006. TheCouncil of American Survey Research Organizations(CASRO) (26) response rate was 51% for identifyinghouseholds with at least one age-eligible resident; theoverall person-level response rate was 28% (25). Of allpersons identified as both age and arthritis diagnosis eli-gible, the ACHES interview completion rate was 69–89%across strata.
Definition of variables. Outcome variables. The 3 ques-tions about volunteering were prefaced with: “These nextquestions refer to volunteer work, that is work outsideyour home for which you are not paid.”
Volunteer status. Respondents were classified as eithervolunteers or non-volunteers based on their response(“yes” or “no,” respectively) to: “Do you currently dovolunteer work?”
Arthritis-attributable volunteering restrictions. Volun-teers responding “yes” to “Do arthritis or joint symptomsaffect the amount or type of volunteer work you do?” wereidentified as reporting arthritis-attributable volunteerlimitation (AAVL). Non-volunteers responding “yes” to “Isarthritis or joint symptoms the main reason you do notdo volunteer work?” were identified as reporting AMBV(Figure 1).
Figure 1. Selection of the study population. The maximum num-ber of missing values for any variable was 49 for body mass index,representing 2.7% of the overall sample. Additional missingvalues were: race/ethnicity (n � 43), physical function ShortForm 36 score (n � 30), age (n � 24), anxiety/depression (n � 12),self-rated health (n � 5), education (n � 4), and employment (n �2). No values were missing from the remaining variables.ACHES � Arthritis Conditions Health Effects Survey; n1 � un-weighted number of respondents used for prevalence estimatesand univariable models; n2 � unweighted number of respondentsused in multivariable models (complete case); AAVL � arthritis-attributable volunteer limitation; AMBV � arthritis is the mainbarrier to volunteering.
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Potential correlates. Potential correlates of each out-come were selected based on a known association witharthritis or the conceptual plausibility of an associationwith volunteering, such as the expectation that physicalimpairments may negatively impact volunteering (22) orthat individuals with depression and arthritis may be in-frequent volunteers (6,7,20,21,27).
Demographics. Demographic variables analyzed wereage, sex, race/ethnicity, education, and employment(collapsed into: “employed” [employed for pay or self-employed], “unable to work/disabled,” and “other,” a het-erogeneous group comprised of those out of work, home-makers, students, and retirees).
Physical and mental health. Respondents’ ratings oftheir general health were collapsed into excellent/verygood, good, or fair/poor. Body mass index (weight in kg/height in m2) was calculated from self-reported weight andheight. Participants were asked the 10-item Short Form 36version 2 physical functioning scale (acute version) (28).Responses were transformed to a 0–100 scale using stan-dard methods (28), and a dichotomous physical functionvariable was created using the median score (sample me-dian 50) as the cut point. Scores below the median repre-sent poor physical function. Data on both anxiety anddepression were collected using the Arthritis Impact Mea-surement Scales subscales (6 items per condition), andresponses were transformed to a 10-point scale as directedby the instrument developers (29). Values �4 were classi-fied as probable anxiety or depression, respectively (30). A
combination variable was created to identify respondentswith at least one of probable anxiety or depression.
Arthritis symptoms and symptom management. Re-spondents rated the severity of arthritis symptoms (i.e.,joint pain, joint stiffness, and arthritis-related fatigue)over the past 7 days on scale of 0 (none) to 10 (as bad as itcan be). If any of the 3 symptoms were rated �7 (31,32),respondents were classified as having current severe ar-thritis symptoms. Participants were categorized as “yes”or “no” to having taken an arthritis education class byresponses to: “Have you ever taken a course or class toteach you how to manage problems related to your arthri-tis or joint symptoms?” Missing values for each of thearthritis symptom and symptom management variableswere assigned to the most conservative category, e.g., par-ticipants without a value for daily joint pain were assignedto the “no” category.
Attitudes and confidence. Attitude was assessed by de-gree of agreement with: “There is nothing a person witharthritis or joint symptoms can do to make their arthritisbetter.” Responses were dichotomized to: strongly dis-agree/disagree or neutral/agree/strongly agree. Confidencein self-management (“How confident are you that you canmanage your arthritis or joint symptoms?”) was assessedusing a 10-point scale, “where 0 is not at all confident and10 is as confident as you can be.” Responses were classi-fied as no/low/mid confidence (range 0–6) or high confi-dence (�7). Missing values for attitude or confidence vari-ables were treated as above.
Table 1. Prevalence and 95% confidence intervals (95% CIs) of volunteering, arthritis-attributable volunteer limitation(AAVL; among volunteers), and arthritis is the main barrier to volunteering (AMBV; among non-volunteers)
among US adults ages >45 years with self-reported doctor-diagnosed arthritis
Volunteers AAVL (n � 12,245)* AMBV (n � 25,451)
N in1,000s
Weighted %(95% CI)
N in1,000s
Weighted %(95% CI)
N in1,000s
Weighted %(95% CI)
Total, age �45 years 12,245 32.5 (29.9–35.0) 4,954 40.5 (35.8–45.1) 6,786 26.7 (24.0–29.3)Age, years
* Weighted n in thousands.† Potentially unreliable relative standard error between 20% and 30%.
Prevalence and Correlates of Volunteering in Adults With Arthritis 909
Table 2. Association between volunteer status and selected characteristics among US adults ages >45 years with self-reporteddoctor-diagnosed arthritis*
Non-volunteer(n � 25,451),
weighted % (95% CI)†
Volunteer(n � 12,245),
weighted % (95% CI)UnivariableOR (95% CI)
MultivariableOR (95% CI)‡
Total 67.5 (65.0–70.1) 32.5 (30.0–35.0)Demographics
EducationLess than high school 19.4 (16.9–21.9) 7.8 (5.1–10.4) 0.5 (0.3–0.7) 0.6 (0.4–0.9)High school graduate 59.4 (56.2–62.6) 53.1 (48.3–57.9) 1.0 1.0College or more 21.2 (18.5–23.9) 39.1 (34.4–43.9) 2.0 (1.5–2.7) 1.5 (1.1–2.0)
Attitudes and confidenceThere is nothing a person with arthritis or joint
symptoms can do to make their arthritis betterDisagree/strongly disagree 61.4 (58.3–64.5) 74.0 (70.0–78.1) 1.7 (1.3–2.3) 1.3 (1.0–1.7)Neutral/agree/strongly agree 38.6 (35.5–41.7) 26.0 (21.9–30.0) 1.0 1.0
Confidence in self-management of symptomsHigh confidence 59.2 (56.1–62.2) 67.5 (63.1–71.9) 1.4 (1.1–1.8) –No/low/mid confidence 40.8 (37.8–43.9) 32.5 (28.1–36.9) 1.0 –
* Numbers may not sum to 100 due to rounding. 95% CI � 95% confidence interval; OR � odds ratio; SF-36 � Short Form 36.† Weighted n in thousands.‡ Multivariable models were restricted to a complete case analysis and only contain variables that satisfied the model selection criteria.§ Potentially unreliable relative standard error between 20% and 30%.
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Statistical analyses. All analyses were conducted withSAS software, version 9.1 (33), using complex survey de-sign procedures. Estimates considered unstable (i.e., witha relative standard error [RSE] �30%) are not reported;potentially unreliable estimates (RSE between 20% and30%) were flagged and should be interpreted with caution.Sampling weights were applied in all of the analyses.These sampling weights were calculated by the surveyvendor and were generated to address the probability ofselection and to compensate for the potential biasing ef-fect of survey nonresponse and undercoverage, a standardprocedure for population-based surveys based on a com-plex design (34). Weights were calculated using the esti-mated prevalence of adults ages �45 years with arthritisfrom 2003–2005 of the National Health Interview Sur-vey (NHIS) as the target population (25,35). A more de-tailed description of sampling methods and weight calcu-lations is available online at: http://www.cdc.gov/arthritis/data_statistics/faqs/data_sources.htm#10.
Descriptive analyses. We estimated the prevalence ofeach outcome: 1) volunteering among US adults witharthritis, 2) AAVL among volunteers, and 3) AMBV amongnon-volunteers. Age-standardized estimates (using theprojected 2000 US standard population) (36) were alsocalculated but were nearly identical to nonstandardizedestimates and are therefore not reported. For each of the 3outcomes, we estimated the prevalence of correlates usingproportions and 95% confidence intervals (95% CIs).
Regression analyses. The relationships between po-tential correlates and each outcome were estimated withodds ratios (OR) and 95% CIs in logistic regression analy-ses. Associations were examined in both univariable andmultivariable-adjusted models.
All of the variables were examined in unadjusted ana-lyses and were considered for inclusion in multivariablemodeling, with the exception of age and sex, which wereautomatically included in all of the multivariable models.Multivariable models were restricted to participants withcomplete information for all variables of interest (i.e., com-plete case analysis) (Figure 1). The 3 outcome variableswere separately examined in a series of forward stepwiselogistic regression models using a statistical significancecutoff criterion of an alpha level of �0.15.
Because ACHES was designed to capture a range ofarthritis impacts, including several items that are concep-tually related, we examined associations among candidatevariables using Pearson’s correlation coefficient. Absoluter values ranged from 0.4 to 0.7, indicating modest to strongcorrelations between variables and, therefore, potentialfor colinearity in multivariable models. Consequently, wetested for colinearity using the Condition Index duringforward stepwise selection; models with a Condition In-dex �30.0 were considered to have colinear terms (37).Therefore, 2 criteria were applied to terminate the forwardselection modeling procedure: if no more variables werestatistically significant at an alpha level of �0.15 or if amodel had a Condition Index �30.0.
RESULTS
Characteristics of the sample. The median age of par-ticipants was 62 years (range 45–99 years, SD 11.1 years).The majority of participants were women (61%) and non-Hispanic whites (81%). Less than a high school educationwas reported by 16% of the sample; 27% reported a col-lege degree or more. One-third of the participants wereemployed. There were no statistical differences in thedistribution of these characteristics within the ACHESpopulation compared with the NHIS respondents (13),with the exception of education. ACHES respondents wereslightly better educated, with fewer participants reportingless than a high school education.
Volunteering. Approximately one-third (12.2 million[32.5%]) of all US adults ages �45 years with arthritisreported volunteering (Table 1). Volunteering was highestamong respondents with at least a college degree (47.1%)or who were employed (38.8%), and lowest among thosewith less than a high school education (16.2%) or unableto work/disabled (10.0%) (Table 1).
The distribution of volunteers and non-volunteers didnot differ by age or sex, but a smaller proportion of volun-teers had less than a high school education compared withnon-volunteers (7.8% versus 19.4%) (Table 2). Comparedwith non-volunteers, volunteers more frequently reportedhigh confidence in self-management (67.5% versus 59.2%)and above median physical function (68.5% versus 44.2%)and had lower prevalence of fair/poor health (18.1% ver-sus 41.8%), probable anxiety/depression (22.9% versus38.3%), or current severe arthritis symptoms (29.5% ver-sus 50.7%) (Table 2).
In both univariable and multivariable analyses, lessthan a high school education, fair/poor health, and poorphysical function were each associated with lower likeli-hood of volunteering (univariable ORs 0.5, 0.4, and 0.4;multivariable-adjusted ORs 0.6, 0.5, and 0.6, respectively)(Table 2). Having at least a college degree was associatedwith an increased likelihood of volunteering in both theunivariable and multivariable analysis (multivariable-adjusted OR 1.5, 95% CI 1.1–2.0) (Table 2).
AAVL. Among volunteers, 40.5% (�5 million people)reported AAVL, with the highest prevalence among thosewho were unable to work/disabled (70.1%) (Table 1).There were no differences in prevalence of AAVL by age,sex, race/ethnicity, or education (Table 1), and there wereno statistically significant differences in the distribution ofthese characteristics among volunteers with and withoutAAVL (Table 3).
Compared with non-AAVL respondents, those withAAVL reported poor physical function more than 4 timesas often (59.3% versus 12.8%) (Table 3) and more fre-quently reported probable anxiety/depression (35.2% ver-sus 14.6%), daily joint pain (67.3% versus 44.2%), andcurrent severe arthritis symptoms (43.1% versus 20.3%)(Table 3). High confidence in symptom management wasreported by 75.1% of non-AAVL respondents comparedwith only 57.6% of those with AAVL (Table 3).
Prevalence and Correlates of Volunteering in Adults With Arthritis 911
Table 3. Association between arthritis-attributable volunteer limitation (AAVL) and selected characteristics among US adultsages >45 years with self-reported doctor-diagnosed arthritis*
No AAVL (n � 7,292),weighted % (95% CI)†
AAVL (n � 4,954),weighted % (95% CI)
UnivariableOR (95% CI)
MultivariableOR (95% CI)‡
Total 59.5 (54.9–64.2) 40.5 (35.8–45.1)Demographics
Race/ethnicityHispanic 3.7 (1.5–5.8)§ –¶ 0.9 (0.4–2.3) –Non-Hispanic white 87.1 (83.7–90.4) 83.1 (78.0–88.2) 1.0 –Non-Hispanic black 6.4 (4.2–8.5) 7.3 (4.6–9.9) 1.3 (0.7–2.5) –Non-Hispanic other –¶ –¶ 1.1 (0.5–2.8) –
EducationLess than high school 6.4 (3.2–9.6)§ 9.8 (5.4–14.2)§ 1.3 (0.6–2.8) 1.4 (0.6–3.5)High school graduate 49.4 (43.3–55.5) 58.6 (51.0–66.1) 1.0 1.0College or more 44.2 (38.1–50.4) 31.6 (24.4–38.9) 0.6 (0.4–0.9) 0.8 (0.5–1.4)
Attitudes and confidenceThere is nothing a person with arthritis or joint
symptoms can do to make their arthritis betterDisagree/strongly disagree 77.0 (71.9–82.2) 72.6 (66.1–79.1) 0.7 (0.5–1.2) –Neutral/agree/strongly agree 23.0 (17.8–28.1) 27.4 (20.9–33.9) 1.0 –
* Numbers may not sum to 100 due to rounding. 95% CI � 95% confidence interval; OR � odds ratio; SF-36 � Short Form 36.† Weighted n in thousands.‡ Multivariable models were restricted to a complete case analysis and only contain variables that satisfied the model selection criteria.§ Potentially unreliable relative standard error between 20% and 30%.¶ Unstable relative standard error �30.0%.
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In univariable models, individuals unable to work/dis-abled and those reporting fair/poor health, poor physicalfunction, and probable anxiety/depression were at least 3times more likely to report AAVL than their respectivecounterparts (Table 3). Poor physical function was thecharacteristic most strongly associated with AAVL in bothunivariable (OR 10.8, 95% CI 6.8–17.2) and multivariable-adjusted models (OR 8.0, 95% CI 4.9–13.1) (Table 3).Respondents in the oldest age group were less likely toreport AAVL (multivariable-adjusted OR 0.4, 95% CI 0.2–0.7) (Table 3).
AMBV. Among non-volunteers, 26.7% (6.8 million peo-ple) reported AMBV (Table 1). The highest prevalence ofAMBV was among those unable to work/disabled (59.5%),followed by Hispanics (41.5%) and those with less than ahigh school education (40.5%) (Table 1). Employed per-sons and those with at least a college degree reported thelowest AMBV prevalence (12.3% and 15.7%, respectively)(Table 1). There were no statistically significant differ-ences in the prevalence of AMBV by age or sex (Table 1).
AMBV respondents indicated approximately twice thefrequency of fair/poor health compared with those notreporting AMBV (67.6% versus 32.5%) (Table 4). A largerand statistically significant proportion of those withAMBV also had poor physical function (87.7% versus44.2%), probable anxiety/depression (58.3% versus31.0%), daily joint pain (81.1% versus 56.7%), and currentsevere arthritis symptoms (83.9% versus 38.7%) comparedwith non-AMBV respondents (Table 4).
The strongest associations in the univariable modelswere between AMBV and poor physical function (OR 8.7),followed by current severe arthritis symptoms (OR 8.3)and being unable to work/disabled (OR 5.4) (Table 4). Poorphysical function and current severe arthritis symptomsremained strongly associated with AMBV in the multiva-riable-adjusted model (ORs 4.3 and 4.0, respectively) (Ta-ble 4). In the multivariable model, respondents who dis-agreed with the attitude statement (nothing can be done tomake arthritis better) were 40% less likely than those whoagreed or were neutral to report AMBV (OR 0.6, 95% CI0.4–0.9) (Table 4).
DISCUSSION
Adults ages �45 years with arthritis who do volunteer aresimilar to other volunteers in that volunteering is morecommon among women than men, lowest among thosewith low education, and least likely among those withfair/poor health. Among volunteers, AAVL was surpris-ingly least likely for the oldest age group, but age had noeffect on AMBV among non-volunteers. Neither AAVL norAMBV was associated with sex, education, or employmentin multivariate models, characteristics frequently associ-ated with volunteering. Inconsistent with expectationsbased on the volunteer literature, probable anxiety/depres-sion was not associated with any outcome in multivariatemodels.
Nearly one-third (32.5%) of US adults ages �45 yearswith arthritis volunteer. When the ACHES sample is re-
stricted to respondents ages �55 years, the prevalence ofvolunteering is 28.6% (95% CI 28.6–34.4). There is a sub-stantial difference in magnitude between volunteer prev-alence among ACHES respondents compared with othersources that report formal and informal volunteering, sug-gesting volunteering may be less frequent among peoplewith arthritis. (Figure 2). Often, people with arthritis em-ploy the adaptive strategy of reducing discretionary activ-ities (e.g., socializing, leisure activities, volunteering, andactivities for relaxation or pleasure) to conserve time andenergy for committed activities (associated with socialidentity and “principle productive roles,” e.g., paid work,family care) and obligatory activities (required for self-sufficient survival, e.g., activities of daily living, self-care,and hygiene, as defined by Verbrugge et al) (38).
For example, in a study examining behavioral modifica-tions for valued life activities among people with rheuma-toid arthritis (RA), 53% of participants reported limitingtheir amount of volunteering (39). The same pattern wasfound in a similar study of people with systemic lupuserythematosus (40). In an osteoarthritis (OA) study, use ofselection (forgoing activities) was associated with havingfewer social resources, greater perceptions of OA impact,and greater personal care disability (41), suggesting thatselection is often used by an already isolated group. Asnoted in these studies, the choice to spend more time oncertain activities to accommodate effects of arthritis neces-sitates less time for other activities. Selection may forceindividuals to limit or give up valued activities, effectivelycontracting the scope of potential activities in which peo-ple participate (39).
Katz and Morris observed that women with RA who hadmore severe functional limitations shifted time away from“committed” and “discretionary” activities toward “oblig-atory” activities and that this shift was associated withpsychological distress, and concluded that there is a need“to maintain important productive, social and discretion-ary activities,” including volunteering (42). More telling,in a longitudinal study of older adults with OA, Machadoet al demonstrated evidence suggesting a pathway fromarthritis symptoms to changes in mood that ultimatelyaffect participation (43).
A better understanding of how people with arthritisselect “discretionary” activities to relinquish and howphysical limitations and demands drive these choices isneeded (44). In a recent OA study, participants were morelikely to report arthritis as intrusive or disruptive to theirlives when it interfered with roles they rated as important(45). These findings by Gignac et al suggest that, althoughwe do not have direct evidence that volunteering is animportant role among AAVL and AMBV respondents,those who do not value volunteering are less likely toreport that arthritis limits their volunteer participation andthat respondents who do value volunteering may be morelikely to perceive arthritis as disruptive to this pursuit.
Because there may be a hierarchy in the “chippingaway” of participation in valued activities, beginning with“discretionary” and eventually affecting “committed” and“obligatory” domains, asking arthritis patients about theirparticipation in activities and any changes in their behav-ior may be useful clinical shorthand to identify patients at
Prevalence and Correlates of Volunteering in Adults With Arthritis 913
Table 4. Association between arthritis as the main barrier to volunteering (AMBV) and selected characteristics among USadults ages >45 years with self-reported doctor-diagnosed arthritis*
No AMBV(n � 18,665),
weighted % (95% CI)†
AMBV(n � 6,786),
weighted % (95% CI)UnivariableOR (95% CI)
MultivariableOR (95% CI)‡
Total 73.3 (70.7–76.0) 26.7 (24.0–29.3)Demographics
EducationLess than high school 15.7 (13.0–18.4) 29.6 (24.4–34.8) 2.1 (1.5–3.0) –High school graduate 60.0 (56.2–63.7) 57.9 (52.2–63.6) 1.0 –College or more 24.4 (21.0–27.7) 12.5 (8.7–16.4) 0.5 (0.3–0.7) –
Attitudes and confidenceThere is nothing a person with arthritis or joint
symptoms can do to make their arthritis betterDisagree/strongly disagree 66.3 (62.7–69.8) 48.0 (42.1–53.8) 0.4 (0.3–0.6) 0.6 (0.4–0.9)Neutral/agree/strongly agree 33.7 (30.2–37.3) 52.0 (46.2–57.9) 1.0 1.0
Confidence in self-management of symptomsHigh confidence 64.5 (60.9–68.1) 44.5 (38.8–50.1) 0.4 (0.3–0.5) –No/low/mid confidence 35.5 (31.9–39.1) 55.5 (49.9–61.2) 1.0 –
* Numbers may not sum to 100 due to rounding. 95% CI � 95% confidence interval; OR � odds ratio; SF-36 � Short Form 36.† Weighted n in thousands.‡ Multivariable models were restricted to a complete case analysis and only contain variables that satisfied the model selection criteria.§ Potentially unreliable relative standard error between 20% and 30%.
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increased risk for restriction, depression, and even jobloss. Public health interventions, too, must be designedand applied in ways that complement clinical efforts, forexample, by bolstering self-management education and com-munication skill building. Almost three-quarters of AAVLand nearly half of AMBV individuals reject the nihilisticattitude statement that nothing can be done for arthritis,suggesting that these groups may be an ideal target popu-lation for evidence-based arthritis self-management educa-tion and physical activity interventions, which have beenshown to be effective in reducing physical and functionallimitations, decreasing pain, and delaying disability due toarthritis (46).
Study findings are subject to at least 5 limitations. First,respondents self-reported a doctor diagnosis of arthritis,which may be subject to recall bias. However, this arthritiscase finding question appears valid for public health sur-veillance (47,48). Second, study data are cross-sectional innature and cannot be used to infer causation. Third, thedefinition of volunteering used in this study does notinclude volunteer activities that take place in the home,e.g., via the computer. Next, AMBV prevalence may beoverestimated due to potential social desirability bias.Even so, the high proportions of fair/poor health (68%),poor physical function (88%), daily joint pain (81%), andcurrent severe arthritis symptoms (84%) among those re-porting AMBV clearly demonstrate a life-altering arthritisimpact. Finally, the CASRO response rate for the surveyoverall was low, which is consistent with declining con-tact and cooperation rates for national random-digit–dialsurveys in general (49,50). Despite low response, thisstudy’s results appear generalizable to the target popula-tion. The distribution of age, sex, race/ethnicity, and em-ployment status among weighted ACHES respondents andthe target population (as measured by the NHIS, an ac-cepted standard for public health surveillance) are almost
identical (25), suggesting that the ACHES results are na-tionally representative of US adults ages �45 years witharthritis.
This study also has important strengths. To our knowl-edge, ACHES is the first survey to collect detailed infor-mation on volunteering among adults with arthritis and toask respondents about the relationship between their ar-thritis and their ability to volunteer. This unique surveyallows us to add to the literature examining arthritis im-pact. Next, our measures specifically ask respondents ifthey attribute their limitation or barrier to volunteering totheir arthritis, which provides valuable insight regardingindividuals’ perceptions of arthritis impact on their lives.Third, the extensive range of information obtained fromACHES respondents enabled us to examine multiple as-pects of participation restriction and disability amongpeople with arthritis within the context of volunteering.Finally, volunteering is a particularly important activityfor older persons and those retired from the work force (3),so the ACHES sample (adults ages �45 years) is an idealpopulation in which to explore the impact of arthritis onvolunteering.
Limitations in volunteering are common among adultswith arthritis. To the extent that people with arthritis arelimited or cannot participate in volunteering because oftheir arthritis, we have an opportunity to assist them ingaining skills to allow them to participate as they choose toin volunteer activities. People who have said that arthritislimits their volunteering or is the only reason they do notvolunteer represent an unmet need in terms of receivingclinical and public health interventions designed anddemonstrated to improve function, delay disability, andincrease quality of life. Ultimately, we need to know whatmatters to people with arthritis and how arthritis affectsthese roles and domains. Future research findings refiningarthritis impact can then be used to design, develop, andtarget effective interventions to minimize arthritis impactand position people with arthritis to make satisfying, self-directed choices about participation in volunteer andother valued activities.
ACKNOWLEDGMENTWe thank Dr. Matthew Zack for providing consultation onregression analyses.
AUTHOR CONTRIBUTIONS
All authors were involved in drafting the article or revising itcritically for important intellectual content, and all authors ap-proved the final version to be submitted for publication. Ms Theishad full access to all of the data in the study and takes responsi-bility for the integrity of the data and the accuracy of the dataanalysis.Study conception and design. Theis, Murphy, Hootman, Helmick,Sacks.Acquisition of data. Theis, Hootman.Analysis and interpretation of data. Theis, Murphy, Hootman,Helmick, Sacks.
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Figure 2. Prevalence of volunteering among US adults by type,source, and age group. * � Arthritis Conditions Health EffectsSurvey (ACHES), ages �45 years with self-reported doctor-diagnosed arthritis, “work outside your home for which you arenot paid”; † � time and money (T&M), an in-depth look at �45volunteers and donors, ages �45 years (9); formal � volunteeringwith or for a particular organization; informal � helping otherswho do not live in the same household; ‡ � ACHES, ages �55years with self-reported doctor-diagnosed arthritis, “work outsideyour home for which you are not paid”; § � Health and Retire-ment Survey (HRS), ages �55 years (10).
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