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Impairments, activity limitations and participation restrictions: Prevalence and associations among persons… Rusch, Melanie; Nixon, Stephanie; Schilder, Arn; Braitstein, Paula; Chan, Keith; Hogg, Robert S Sep 6, 2004

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ralHealth and Quality of Life OutcomesssBioMed CentOpen AcceResearchImpairments, activity limitations and participation restrictions: Prevalence and associations among persons living with HIV/AIDS in British ColumbiaMelanie Rusch*1,2, Stephanie Nixon3, Arn Schilder1,4, Paula Braitstein1,2,4, Keith Chan1 and Robert S Hogg1,2Address: 1Department of Population Health, British Columbia Centre for Excellence in HIV/AIDS, St. Paul's Hospital, Vancouver, Canada, 2Department of Health Care and Epidemiology, University of British Columbia, Vancouver, Canada, 3Department of Physical Therapy, University of Toronto, Toronto, Canada and 4British Columbia Persons with AIDS (BCPWA) Society, Vancouver, CanadaEmail: Melanie Rusch* - mrusch@interchange.ubc.ca; Stephanie Nixon - stephanie.nixon@utoronto.ca; Arn Schilder - arn@cfenet.ubc.ca; Paula Braitstein - paulab@interchange.ubc.ca; Keith Chan - keith@cfenet.ubc.ca; Robert S Hogg - bobhog@cfenet.ubc.ca* Corresponding author    disablementimpairmentsactivity limitationsparticipation restrictionsdisabilityHIV/AIDSAbstractBackground: To measure the prevalence of and associations among impairments, activitylimitations and participation restrictions in persons living with HIV in British Columbia to informsupport and care programs, policy and research.Methods: A cross-sectional population-based sample of persons living with HIV in BritishColumbia was obtained through an anonymous survey sent to members of the British ColumbiaPersons With AIDS Society. The survey addressed the experience of physical and mentalimpairments, and the experience and level of activity limitations and participation restrictions.Associations were measured in three ways: 1) impact of types of impairment on social restriction;2) impact of specific limitations on social restriction; and 3) independent association of overallimpairments and limitations on restriction levels. Logistic regression was used to measureassociations with social restriction, while ordinal logistic regression was used to measureassociations with a three-category measure of restriction level.Results: The survey was returned by 762 (50.5%) of the BCPWA participants. Over ninety percentof the population experienced one or more impairments, with one-third reporting over ten.Prevalence of activity limitations and participation restrictions was 80.4% and 93.2%, respectively.The presence of social restrictions was most closely associated with mental function impairments(OR: 7.0 for impairment vs. no impairment; 95% CI: 4.7 – 10.4). All limitations were associated withsocial restriction. Among those with ≤ 200 CD4 cells/mm3, odds of being at a higher restrictionlevel were lower among those on antiretrovirals (OR: 0.3 for antiretrovirals vs. no antiretrovirals;95% CI: 0.1–0.9), while odds of higher restriction were increased with higher limitation (OR: 3.6for limitation score of 1–5 vs. no limitation, 95%CI: 0.9–14.2; OR: 24.7 for limitation score > 5 vs.Published: 06 September 2004Health and Quality of Life Outcomes 2004, 2:46 doi:10.1186/1477-7525-2-46Received: 11 June 2004Accepted: 06 September 2004This article is available from: http://www.hqlo.com/content/2/1/46© 2004 Rusch et al; licensee BioMed Central Ltd. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Page 1 of 10(page number not for citation purposes)no limitation, 95%CI: 4.9–125.0). Among those with > 200 CD4 cells/mm3, the odds of higherrestriction were increased with higher limitation (OR: 2.7 for limitation score of 1–5 vs. noHealth and Quality of Life Outcomes 2004, 2:46 http://www.hqlo.com/content/2/1/46limitation, 95%CI: 1.4–5.1; OR: 8.6 for limitation score > 5 vs. no limitation, 95%CI: 3.9–18.8), aswell as by additional number of impairments (OR:1.2 for every additional impairment; 95% CI:1.1–1.3).Conclusions: This population-based sample of people living with HIV has been experiencingextremely high rates of impairments, activity limitations and participation restrictions.Furthermore, the complex inter-relationships identified amongst the levels reveal lessons forprogramming, policy and research in terms of the factors that contribute most to a higher qualityof life.BackgroundFor most people who are able to access and tolerate highlyactive antiretroviral therapy (HAART), HIV/AIDS hasbecome a chronic condition characterized by cycles of ill-ness and wellness. People live longer lives, but with phys-ical, psychological and social challenges that affect qualityof life [1-3]. Evidence of this phenomenon may be foundin qualitative studies describing the ways in whichimproved health has also brought about different andunforeseen social, psychological and physical challengesfor many people who had previously been facing end-stage disease.For instance, Brashers et al (1999) identified four catego-ries of "uncertainties" resulting from the experience of"revival" brought about by HAART, including (a) renego-tiating feelings of hope and future orientation in the faceof questionable durability of immune restoration; (b) fearabout social roles and identities, in the transition from aperson who is dying to a person living with a chronic ill-ness; (c) concerns with interpersonal relations, includingthe potential of stigmatizing reactions from employersand co-workers; and, (d) reconsidering the quality of theirlives, captured in this quote from one participant, 'Thegood news is you're going to live, the bad news is you'renot going to enjoy the rest of your life' [1].Sowell et al. (1998) used in-depth interviews to explorethe psychological changes and care delivery issues experi-enced by HIV-positive men who were facing end-stage dis-ease but had experienced dramatic physicalimprovements [4]. Key findings included themes aroundprotease inhibitors as a reprieve from death, shifting per-spectives on roles and relationships, and a renewed needfor advocacy related to care, treatment and support. Oth-ers have examined particular aspects of living with HIV inthe post-HAART era, such as challenges related to incomeand employment [5]. Along with qualitative literature, theHIV communities themselves have responded with a waveof community-based studies, publications and program-ming to address challenges related to living with the upsand downs of life on combination therapies [6-9].Quantitative studies exploring the life-and health-relatedconsequences of living with HIV are limited. An exceptionis the HIV Cost and Services Utilization Survey in theUnited States, which described physical and social rolerestrictions in a nationally representative sample [10];however, no similar work exists in Canada. The Americanstudy was undertaken during the early years of HAART,and so the majority of participants were not yet on pro-tease inhibitors. As such, there is a gap in the literature interms of studies that systematically quantify the preva-lence of life-and health-related challenges associated withliving with HIV since the advent of HAART.The International Classification of Functioning, Disabilityand Health (WHO, 2001) offers a useful framework forstudying disablement and health-related consequences ofdisease based on the following three concepts: impair-ments, activity limitations and participation restrictions[11]. Impairments are understood to be problems withphysiological functioning or anatomical (e.g., organs,limbs) structure of the body. Activity limitations aredefined as difficulties in executing a task or action. Finally,participation restrictions are problems relating to involve-ment in life situations. This classification system and itsprecursor, the International Classification of Impair-ments, Disabilities and Handicaps (WHO, 1980), havebeen used to frame a plethora of studies on a diverse arrayof diseases and conditions [12-15]. Furthermore, thisframework has been used to conceptualize HIV [16], andinforms the policy, research and advocacy work of organ-izations such as the Canadian Working Group on HIV andRehabilitation [17].This article addresses this gap in the literature by reportingon the results of a quantitative investigation into the prev-alence of and associations among impairments, activitylimitations and participation restrictions experienced bypeople living with HIV in British Columbia.MethodsData sourcesIndividuals living with HIV were involved in all stages ofPage 2 of 10(page number not for citation purposes)this project, from identification of the research questionto data collection and analysis. A lead partner was theHealth and Quality of Life Outcomes 2004, 2:46 http://www.hqlo.com/content/2/1/46British Columbia Persons With AIDS Society (BCPWA),an organization of more than 3,600 HIV positive individ-uals living in British Columbia, which was created to pro-vide support, information and advocacy for its members.From May to September of 2002, the BCPWA in conjunc-tion with the British Columbia Centre for Excellence inHIV/AIDS conducted a survey of HIV positive individualsliving in British Columbia. The anonymous self-adminis-tered questionnaire was mailed to the 1508 HIV positiveindividuals registered with the BCPWA who had con-sented to receive mailings.Definition of disabilityA section of the survey on diagnosed conditions askedparticipants to indicate if a doctor had ever in their life-time diagnosed them with any conditions from a list ofthirteen, including depression, schizophrenia, bipolar dis-order and post-traumatic stress disorder, as well as a spaceto indicate any diagnoses that was not present in the list.Participants identified their experiences during the pastmonth using check-lists of impairments, activity limita-tions and participation restrictions that included space toidentify unlisted items.Participants were asked: "Within the last month have youexperienced any of the following..." after which they wereable to check off symptoms from a list of twenty-two,including a space for unlisted items. The list of impair-ments was categorized into mental, internal system, sen-sory and neuromusculoskeletal groups based on theInternational Classification of Functioning, Disability andHealth [12]. Mental impairments included reducedlibido, poor concentration, poor appetite, chronic fatigue,decreased endurance, decreased memory, impaired cogni-tion and aphasia. Internal impairments includeddiarrhea, gastric reflux, shortness of breath, constipation,wasting, weakness, vomiting and incontinence. Sensoryimpairments included headaches, altered sensations, nau-sea, mouth pain and decreased vision. Neuromuscu-loskeletal impairments included altered muscle tone, stiffjoints, seizures, hemiparesis and paraparesis. This sectionwas followed by a question which asked participants howmuch HIV-related pain they had experienced in the pastmonth, with categorical options including none, a littlebit, mild or infrequent, moderate, severe or persistent anddon't know. Participants were also asked to pinpoint thelocation(s) of their HIV related pain.Activity limitations were addressed by asking the partici-pants " [h]ow well can you manage these typical dailyactivities?" with an indication to circle the response whichshower, and dress followed. For each item, participantsindicated whether they were (a) completely able, (b)somewhat limited or (c) unable to perform the activity.Overall prevalence of activity limitations was calculatedby including anyone indicating (b) or (c) for any one ofthe fifteen items.In the same way, participants were asked " [h]as yourhealth limited your usual [role/participation]" in any of anumber of categorical activities and functions. Partici-pants were indicated to choose the response that cameclosest to the way they had been feeling during the pastmonth. A ten-item list was used to assess levels of restric-tion in social, student, and cultural roles. Participantsindicated whether they were (a) not limited, (b) some-what limited or (c) very limited with respect to their abil-ity to function in these roles. Overall prevalence ofparticipation restrictions was calculated by including any-one indicating (b) or (c) for any one of the ten items.Statistical analysisRates of impairments, activity limitations and participa-tion restrictions among the participants were comparedacross three categories of CD4 cell counts (≤ 200 cells/mm3, 201 to 500 cells/mm3 and > 500 cells/mm3) usinga chi-squared test for categorical variables and theKruskal-Wallis test for continuous variables. Bonferronicorrections for multiple comparisons were done for eachitem and those which remained significant are indicatedin bold.To test the hypothesis that social role restrictions wouldbe more strongly associated with mental function impair-ments and personal care and mobility limitations, a seriesof logistic regression models were tested with each cate-gory of impairment and limitation. A dichotomous out-come was used, collapsing "somewhat" and "very much"social role restriction into any social restriction. Likewise,specific activity limitations were dichotomized into "nolimitations" vs. "some effort" required or "unable" toaccomplish the activity. Associations of social restrictionwith impairment categories and specific activity limita-tions were examined univariately and in adjusted modelsaccounting for age, sex, income, depression, pain, risk cat-egory (men who have sex with men, injecting drug users,heterosexual contact, combination) and number of symp-toms for activity limitation models.A scoring system was then used to develop categories ofactivity limitation and participation restriction. If a partic-ipant indicated an activity limitation item at the highestlevel ("unable" to accomplish) or a participatory rolerestriction at the highest level ("very much" restricted),Page 3 of 10(page number not for citation purposes)best describes their experience in the past month. A fif-teen-item list including ability to walk one block, eat,two points were received, while participants indicating anactivity limitation item at moderate level (requiringHealth and Quality of Life Outcomes 2004, 2:46 http://www.hqlo.com/content/2/1/46"effort" to accomplish) or a participation restriction itemat a moderate level ("somewhat" restricted), one pointwas received. Overall scores for participation restrictionand activity limitation were therefore dependent on boththe severity and total number of challenges in activities orparticipatory roles.The participation restriction score, with an overall maxi-mum of 20, was then categorized into three levels: 0 to 5points, 6 to 10 points and > 10 points, based on the pop-ulation distribution of the score. Likewise, the activitylimitation score, with an overall maximum of 28, was alsocategorized based on distribution as follows: 0, 1 to 5points, and > 5 points. The higher the score, the greaterthe disablement.An overall model examined the associations of increasingparticipation restriction level with number of impair-ments and activity limitation scores, testing the hypothe-sis that impairments may account for some of theassociations seen between activity limitations and partici-pation restrictions, but that both of the former wouldhave independent associations with the latter. Ordinallogistic regression was implemented, using the three-levelparticipation restriction outcome and testing number ofsymptoms, categorical limited activity score, pain andmental diagnoses as explanatory variables. All modelswere stratified on CD4 levels, with separate models builtfor individuals with counts below 200 cells/mm3, andadjusted for age, gender, employment, years since diagno-sis and risk category.ResultsPopulation characteristicsOf the 762 people living with HIV who completed the sur-vey, 614 provided information about their CD4 levels andwere included in this analysis. The population answeringthe BCPWA survey was comprised mainly of white(88.7%), sexual-minority males (76.6%) between theages of 30 to 49 (63.9%). The 148 respondents who werenot included in the analysis because they did not provideCD4 information were in a lower income bracket (42.5%vs 19.9%; p-value < 0.001), were more likely to be currentIDUs (11.3% vs 4.3%; p-value < 0.001) and more likely tobe First Nations/Inuit/Metis (17.6% vs. 6.5%; p-value <0.001).A comparison of all BCPWA members who received thesurvey and the subset who responded found a similar dis-tribution of age and a similar proportion identifying asAboriginal (7.1% vs. 8.7%). The proportion of femaleswas higher among the total BCPWA population thanamong the subset of respondents (13.5% vs.10.2%; p =Prevalence of impairments, activity limitations and participation restrictionsTable 1 describes levels of diagnoses, impairments, activ-ity limitations and participation restrictions among par-ticipants. Mental health diagnoses were reported by62.9% (N = 479) of the participants. The most prevalentdiagnosis was depression with an overall prevalence of58.1%. Among those listing one or more diagnoses,92.5% experienced depression as one of their diagnoses.While the overall number of participants with depressionappeared lower among those with CD4 ≤ 200 cells/ml, thepercent of those listing depression out of those with anydiagnosis remained close to 92.5% across all strata.The presence of multiple impairments among the partici-pants was also high, with a median of 7 (3,12) impair-ments and approximately one third of the participantsexperiencing more than ten impairments. At least oneimpairment was reported by 91.5% (N = 697). There wasa significant difference in the distribution of impairmentsacross CD4 categories, which remained after Bonferronicorrection (CD4 ≤ 200 cells/ml vs CD4 > 500 cells/ml, p-value= 0.002; CD4 ≤ 200 cells/ml vs CD4 between 200and 500 cells/ml, p-value = 0.017). Mental impairmentwas reported by 78.2% (N = 596), sensory impairment by71.9% (N = 548), neuromuscular impairment by 49.5%(N = 377), and internal impairment by 81.0% (N = 617)of the participants.Pain was reported by over half of the participants, and byover three quarters of the participants with CD4 ≤ 200cells/ml. Approximately one-third reported little or mildpain and 37.1% reported moderate or severe pain. Forparticipants with lower CD4 counts, more peoplereported moderate and severe pain (50.4% vs. 38.7% vs.34.9%; p-value 0.08), although comparisons of each CD4category to the others showed no significant differences.Activity limitations were reported by 80.6% (N = 607) ofthe participants. The median number of activity limita-tions reported by an individual was 3 (1, 7). Six hundredand ninety-nine individuals (93.2%) reported some levelof participation restriction. The median number of partic-ipatory roles in which individuals felt somewhat or highlyrestricted was 7 (3, 9). Although distributions of activitylimitations and participation restrictions were signifi-cantly different, adjustment for multiple comparisonsacross the CD4 categories resulted in no significant differ-ence in prevalence.Figures 1,2,3 summarize the prevalence of impairments,activity limitations and participation restrictions, respec-tively. The most prevalent impairments experienced byPage 4 of 10(page number not for citation purposes)0.001). participants included diarrhea (57.1%), reduced libido(55.8%), general weakness (48.2%), poor concentrationHealth and Quality of Life Outcomes 2004, 2:46 http://www.hqlo.com/content/2/1/46(47.0%), headaches (46.9%) and chronic fatigue(46.6%). Vigorous and moderate activities, sexual activi-ties and household chores were the most frequentlyemployee roles and financial roles being the mostprevalent.Univariate associations of impairments and activity limitations on social role restrictionsTable 2 describes the univariate odds ratios for presence ofsocial role restriction (yes vs. no) based on impairmentcategories and type of activity limitation. All impairmentsand activity limitations were significantly associated withsocial role restriction. Social role restriction was moststrongly associated with limitations in using the toilet,(OR: 18.5 for toilet difficulties vs. no toilet difficulties;95%CI: 4.5 – 76.3), followed by banking, (OR: 11.3 forbanking difficulties vs. no banking difficulties; 95%CI: 5.4– 23.5). Social role restriction had the weakest associationwith getting out of bed, (OR: 3.6 for difficulties getting outof bed vs. no difficulties; 95%CI: 2.3 – 5.6). With respectto impairment categories, social role restriction was moststrongly associated with mental impairments (OR 7.0 formental impairments vs. no mental impairments; 95% CI4.7–10.4) although the other three impairment categorieshad odds ratios higher than four.Adjusted odds ratios stratified by CD4 counts remainedsignificant for getting groceries, doing laundry, householdchores, and mental functioning, regardless of CD4 levels,although the estimates were higher for participants withcounts under 200 cells/mm3. For those with CD4 countsabove 200 cells/mm3, difficulties with eating, publictransportation, moderate or vigorous activities, sexualactivities, neuromuscular functioning and sensory func-tioning also remained significantly associated with socialTable 1: Prevalence of diagnosed conditions, impairments and pain, activity limitations and participation restrictions experienced by BCPWA participants by CD4 cell countsCD4 < 200 CD4 201 to 500 CD4 > 500 p-valueDiagnosed conditionsDepression 64 (52.0) 183 (59.2) 110 (61.5) 0.238General Anxiety 11 (8.9) 34 (11.0) 14 (7.8) 0.488Post traumatic Stress 6 (4.9) 18 (5.8) 13 (7.3) 0.677Panic Disorder 8 (6.5) 35 (11.4) 12 (6.7) 0.124Median number of impairments (IQR) 9 (5, 13) 7 (2.5, 12) 7 (3, 12) 0.006% With any impairment 120 (97.6) 285 (92.5) 161 (89.9) 0.041PainNone 25 (20.7) 82 (29.4) 48 (28.4) 0.079Little/mild 35 (28.9) 89 (31.9) 62 (36.7)Moderate/severe 61 (50.4) 108 (38.7) 59 (34.9)Median number of activity limitations (IQR) 3 (1, 7) 3 (1, 7) 2 (1, 5) 0.015% With any Activity Limitation 108 (87.8) 236 (77.4) 137 (76.5) 0.031Median number of Participation Restrictions (IQR) 7 (4, 9) 7 (3, 9) 7 (3, 9) 0.251% With any Participation Restrictions 121 (98.4) 278 (91.5) 161 (89.9) 0.017Bold print indicates comparison that remained significant at the p = 0.016 level after Bonferroni correction for multiple comparisons.Prevalence of specific impairments for participants with CD4 counts ≤ 200 cells/mm3 (speckled ba s), 201 to 500 cells/mm3 (downward diagonally-striped bars) and >h riz nta y-str ped bars)Figur  1Prevalence of specific impairments for participants with CD4 counts ≤ 200 cells/mm3 (speckled bars), 201 to 500 cells/mm3 (downward diagonally-striped bars) and > 500 cells/mm3 (horizontally-striped bars). Significant p-value from chi-square test across CD4 categories.010203040506070diarrheareduced libidoweaknesspoor concentrationheadachechronic fatiguestiff jointsdecreased endurancepoor appetitedecreased memorynauseagastric refluxaltered sensationshortness of breathwastingconstipationCD4 < 200CD4 201 - 500CD4 > 500Page 5 of 10(page number not for citation purposes)reported limitations. The level of participation restrictionswas high for all CD4 categories, with sexual roles, student/restrictions. Adjusted odds ratios for using the toilet andgetting dressed were unable to be estimated as these wereHealth and Quality of Life Outcomes 2004, 2:46 http://www.hqlo.com/content/2/1/46co-linear with the outcome. Stratified, unadjusted esti-mates of 9-fold and 37-fold increases in social restrictionwere seen with limitations in toileting.Stratification by CD4 levels indicated a general effectmodification across activity limitations and impairmentcategories, with greater, although more unstable, associa-tions with social restrictions being found among partici-pants with < 200 cells/mm3.Multivariate associations of impairments and activity limitations with participation restriction levelsTable 3 describes the ordinal logistic regression modelexamining associations with a three-category measure ofparticipation restriction level, stratified by CD4 cellcounts. Among those with CD4 counts under 200 cells/mm3, being in a higher category of participationrestriction was strongly associated with having activitylimitation scores above ten, and was marginally inverselyassociated with being on antiretrovirals. Increasingnumber of impairments did not show any significantassociation.tion was associated with increasing levels of limited activ-ity [(OR: 2.7 for limited activity scores of 4–10 vs. scores< 4; 95%CI: 1.4–5.1) and (OR: 8.6 for limited activityscores > 10 vs. scores < 4; 95%CI: 3.9–18.8)]. A higherparticipation restriction category was also significantlyassociated with increasing number of impairments, with a19% increase in the odds with additional impairment.Increased participation restriction level was only margin-ally significantly associated with moderate or severe pain;however, point estimates for the pain categories suggesteda dose response relationship, as did the inclusion of painas a continuous variable (p-value 0.066).DiscussionThis study has demonstrated that a population-basedsample of people living with HIV in British Columbiahave been experiencing strikingly high levels of depres-sion, body impairments, activity limitations and partici-pation restrictions. The latter two categories were higheramong this population than a national survey of HIV pos-itive persons in the United States[10]. However, the Amer-ican study was conducted prior to HAART availability,underscoring the importance of examining quality of lifeissues faced in the post-HAART era. In a study examiningPrevalence of specific activity limitations for participants with CD4 counts ≤ 200 cells/mm3 (speckled ba s), 201 to 500 cells/mm3 (downward diagonally-striped bars) and > 500 h rizontal y-striped bars)Figur  2Prevalence of specific activity limitations for participants with CD4 counts ≤ 200 cells/mm3 (speckled bars), 201 to 500 cells/mm3 (downward diagonally-striped bars) and > 500 cells/mm3 (horizontally-striped bars). Significant p-value from chi-square test across CD4 categories.0102030405060708090walkingeatingget dressedshowertoiletget out of beddrivepublic transshoppingbankinglaundryhouseholdsexmod actvigactCD4 < 200CD4 201 - 500CD4 > 500Prevalence of specific participation restrictions for partici-pants with CD4 counts ≤ 200 cells/mm3 (speckled bars), 201 to 500 cells/mm3 (downward d agonally-s riped bars) and > 500 cells/mm3 (h rizontally-str ped bars)Figur  3Prevalence of specific participation restrictions for partici-pants with CD4 counts ≤ 200 cells/mm3 (speckled bars), 201 to 500 cells/mm3 (downward diagonally-striped bars) and > 500 cells/mm3 (horizontally-striped bars). Significant p-value from chi-square test across CD4 categories.0102030405060708090socialstudentvolunteerhouseholdfinancialsexualculturalcommunityhobbiesdiscriminationCD4 < 200CD4 201 - 500CD4 > 500Page 6 of 10(page number not for citation purposes)Among participants with CD4 counts above 200 cells/mm3, being in a higher category of participation restric-similar concepts of activity limitation among cancerpatients, the percent experiencing any difficulties rangedHealth and Quality of Life Outcomes 2004, 2:46 http://www.hqlo.com/content/2/1/46from 18.0 to 70.0%, depending on the type of cancer, butwas only 30.0% overall [18]. Another study of cancer sur-vivors found a similar prevalence to that seen in thepresent study (80.0%) when including all ambulatory dif-ficulties, not just activities of daily living [19]. Theelevated levels of limitation among the BCPWA popula-tion were also emphasized in a comparison with the gen-eral population and with those identifying as sufferingfrom a chronic illness, where the least difference showeda five-fold increase [20].The level of depression among this population wasextremely high. Nearly 60.0% of the participants reportedever having been diagnosed with depression by a doctor.Levels of depression among HIV positive persons reportedin the literature range from 5.0% to 40.0%, althoughamong HIV positive women, 60.0% prevalence has beenreported [21,22]. Depression is generally found to behigher, regardless of HIV status, among women and menwho have sex with men [21]. Studies conducted amongMSM have found prevalence of major depression to rangefrom 23.0 to 37.0%, while Aboriginal populations in gen-eral, and Aboriginal MSM in particular, have been shownto have higher depression scores [23-25]. Likewise,current depression but may miss the experience of peoplewith recurrent episodes who feel well at the time of test-ing. The high level of depression recorded in this studymay be the result of a large percentage of men who havesex with men in the sample as well as the survey's abilityto capture more cumulative measures of depression. Thehigh prevalence may be due in part to the self-report of thediagnosis as well, which may result in recall bias andincreased reporting of non-diagnosed depression. Regard-less, this common experience of depression demands con-sideration by researchers, policy-makers and careproviders concerned with the quality of life of people liv-ing with HIV.The prevalence of impairments was also high, withdiarrhea at the top of the list, followed by problems withfatigue and endurance. Furthermore, challenges withdaily activities and social roles were extremely common,at greater than 80.0 and 90.0%, respectively. The high pro-portion of individuals experiencing impairments, activitylimitations and participation restrictions sheds light onthe spectrum of challenges related to living with HIV.Even among those with relatively high CD4 counts, theimpact of HIV on disability and health is not trivial.Table 2: Univariate and adjusted odds ratios for social role restriction given each activity limitation and prevalence of these limitations in this populationActivity Prevalence (%) Odds Ratio (95% CI) Adjusted Odds Ratio (95% CI)*≤ 200 cells/ml > 200 cells/mlGetting dressed 8.9 (54) 4.03 (2.03 – 8.00) 7.90** (0.45 – 137) 1.60 (0.47 – 5.44)Using the toilet 6.3 (38) 18.47 (4.47 – 76.3) 9.14** (0.52 – 159) 37.7** (2.29 – 620)Showering 10.2 (62) 6.62 (3.15 – 13.91) 3.38 (0.41 – 28) 2.30 (0.57 – 9.18)Walking one block 13.2 (80) 5.33 (2.86 – 9.91) 3.33 (0.54 – 20) 3.40 (0.72 – 16)Banking 16.4 (99) 11.27 (5.42 – 23.45) 3.78 (0.33 – 42) 3.30 (1.09 – 10)Getting out of bed 20.8 (125) 3.63 (2.34 – 5.63) 1.15 (0.31 – 4.14) 1.89 (0.79 – 4.54)Driving 21.5 (121) 3.51 (2.25 – 5.47) 1.59 (0.45 – 5.49) 1.93 (0.87 – 4.31)Eating 20.1 (122) 4.66 (2.89 – 7.53) 0.87 (0.26 – 2.94) 3.17 (1.07 – 9.37)Public Transportation 25.2 (148) 6.75 (4.19 – 10.86) 4.36 (0.91 – 21) 3.29 (1.32 – 8.20)Laundry 28.1 (171) 7.53 (4.73 – 11.98) 8.41 (1.32 – 54) 3.26 (1.41 – 7.52)Groceries 32.6 (198) 8.43 (5.38 – 13.21) 3.97 (1.21 – 13) 2.97 (1.37 – 6.43)Household chores 39.6 (241) 6.89 (4.72 – 10.06) 5.12 (1.62 – 16.2) 3.11 (1.59 – 6.10)Moderate activity 42.4 (258) 5.87 (4.11 – 8.37) 2.10 (0.76 – 5.77) 3.10 (1.62 – 5.93)Sexual activity 46.6 (283) 5.33 (3.81 – 7.47) 2.56 (1.00 – 6.57) 2.06 (1.16 – 3.68)Vigorous activity 71.9 (437) 5.09 (3.61 – 7.19) 2.69 (0.97 – 7.48) 2.60 (1.37 – 4.96)Impairment CategoryMental functioning 78.7 (481) 7.02 (4.73 – 10.4) 18.71 (2.31 – 151) 4.32 (2.20 – 8.51)Neuro-musculoskeletal functioning 49.3 (301) 4.12 (2.98 – 5.69) 1.77 (0.67 – 4.68) 1.76 (1.03 – 3.00)Sensory functioning 72.3 (442) 4.12 (2.94 – 5.78) 0.85 (0.27 – 2.65) 2.17 (1.20 – 3.93)Internal functioning 81.4 (500) 4.15 (2.82 – 6.12) 2.48 (0.69 – 8.91) 1.84 (0.96 – 3.51)*Adjusted for age, gender, income, number of impairments (for activity limitation models), pain, risk category and doctor-diagnosed depression**Small sample size; analysis stratified on CD4 but not adjusted due to zero cells.Page 7 of 10(page number not for citation purposes)depression among IDU populations has been seen to beas high as 47.0% [24]. Some study scales may captureHealth and Quality of Life Outcomes 2004, 2:46 http://www.hqlo.com/content/2/1/46Of note, the differences experienced between peopleaccording to categories of CD4 levels were less and lessapparent going from impairments (problems at the levelof organ or body part) to activity limitations to participa-tion restrictions (problems with social roles). This drawsattention to the variety of influences affecting a person'sability to perform daily tasks and participate in regularsocietal roles above and beyond his/her clinical measuresof disease status.All types of activity limitation were associated with theexperiencing of social role restrictions. After accountingfor impairments, depression and pain levels, thereremained significant associations between householdupkeep, including laundry and groceries, and social roleparticipation. Although it was hypothesized that personalcare issues would have stronger associations, this was notthe case. This may be because the severity of personal carelimitations (dressing, eating, showering) is such thatpendent association between the limitation and socialrestriction.Household chores, getting groceries and doing laundry aswell as moderate and vigorous activities had significantassociations with social role restrictions and had the high-est prevalence in this population. Therefore, interventionsthat target these types of limitations may provide the mostbenefit at a population level. Whether or not these inter-ventions would have any impact on an individual's feel-ings of participatory restriction remains to be seen;however, coordinating these types of simple interventionsmight offer contact with people in need of social support.Mental impairments were the most prevalent of the fourimpairment categories and were found to have a signifi-cant association with participation restrictions. Theseresults mirror a study describing disability among anational sample of people living with HIV in the UnitedStates which reported a correlation between generalfatigue and increased limitations in both physical and rolefunctions [10]. Other reports have also found relation-ships among neuropsychological performance, depres-sion, stress levels and perceived disability [26]. It issuggested that increased social support networks canresult in improved mental health, which may indicate thatthe association between the presence of mental impair-ment and the ability to interact in social and communityroles is not unidirectional.The adjusted models (Table 3) indicate that both impair-ments and activity limitations remain associated with par-ticipation restrictions independent of one another forpeople with high CD4 counts. The use of antiretroviralsamong those with low CD4 counts is associated withlower participation restriction levels. Since this cannot beaccounted for through a lessening of impairments or lim-itations among those on antiretrovirals, it is more likely areflection of the type of support and interaction with thehealth care system among those who are able to accessantiretrovirals.Limitations of the studyLimitations of the study include the somewhat homoge-neous nature of the participants, which affects the gener-alizability of these findings to other populations. Theparticipants were mainly white, sexual-minority maleswith moderate yearly incomes and stable housing. Theunder-representation of people who are homeless, injec-tion drug users, female and Aboriginals becomes apparentwhen comparing the low proportions seen amongst theBCPWA membership to the higher proportions seen inincident cases reported by the British Columbia Centre forTable 3: Ordinal logistic regression estimating the probability of being in a higher category of the three level participation restriction score based on levels of impairment, limited activity scores and pain.CD4 ≤ 200OR* 95% CILimited Activity scoreNone 11–5 3.58 0.91 – 14.2> 5 24.7 4.85 – 125Number of impairments 1.01 0.94 – 1.12Antiretroviral use 0.28 0.08 – 0.93CD4 > 200OR* 95% CILimited Activity scoreNone 11–5 2.67 1.40 – 5.12> 5 8.56 3.90 – 18.8Number of impairments 1.19 1.12 – 1.25PainNone 1Some/mild 1.31 0.71 – 2.44Mod/severe 1.78 0.85 – 3.75Antiretroviral use 1.39 0.83 – 2.35*adjusted for age, gender, employment, education, years since diagnosis and risk categoryPage 8 of 10(page number not for citation purposes)among those experiencing these limitations, the presenceof pain or numerous impairments overshadows any inde-Disease Control [27].Health and Quality of Life Outcomes 2004, 2:46 http://www.hqlo.com/content/2/1/46The survey was sent to BCPWA members consenting toreceive mail. Individuals who did not consent were morelikely to reside in the Greater Vancouver region, suggest-ing a greater geographical representation from outside ofthis urban area. Non-consenting BCPWA members werealso more likely to be female (15.8% vs 11.9%) and morelikely to be First Nations, Inuit or Metis (27.1% vs 8.4%).Furthermore, because the survey was anonymous and self-reported, there are issues with missing data andincomplete records. For example, almost 20.0% of thesample, again representing a high proportion of womenand First Nations, were excluded because of missing CD4information. While the exclusion of this population mayhave affected the power and generalizability of the study,one may argue that challenges reported in this study maybe an underestimation of the restrictions in this popula-tion due to compounding social inequity issues.Lastly, there are limitations in the nature of self-reporteddiagnoses. Participants may have trouble recalling thepresence or absence of impairments, limitations or restric-tions over the past month. Although there was no directincentive, participants may be biased towards increasedreporting of problems as they may feel that this would bebeneficial for program funding and support.Despite these limitations, this survey represents a largeprovincial sample and is one of few attempts to collectinformation from a population-based sample on thisscale. Furthermore, this is one of the first studies to sys-tematically quantify levels of disablement among personsliving with HIV.ConclusionsThis study revealed a strikingly high prevalence of impair-ments, activity limitations and participation restrictionsamong a population-based sample of people living withHIV in British Columbia. The complicated interplayamong these categories requires further study, but it isclear that interventions designed to help overcome activ-ity limitations and social support programs are required,especially those addressing mental impairments anddepression. While impairments and limitations are notalways reversible, innovative programs that help peopleliving with HIV address these challenges may help todecrease the subsequent high rates of participatoryrestrictions experienced. Antiretroviral treatments haveenabled the prolongation of the lives of people who areHIV-infected; now we need to give due attention to opti-mizing the quality of these extended lives.Authors' ContributionsMR and KC carried out the statistical analyses; SN and ASceptualization of the study and the interpretation of theresults; RH participated in the conceptualization anddesign of the study. All authors read and approved thefinal manuscript.AcknowledgmentsThis work was supported by the Canadian Working Group on HIV and Rehabilitation (CWGHR), by the Michael Smith Foundation for Health Research through a Senior Scholar Award to Dr. Robert Hogg, a Doctoral Scholar Award to Paula Braitstein and a Training award to Melanie Rusch, as well as by the Canadian Institutes for Health Research through a Fellow-ship to Stephanie Nixon.Special thanks to Ruth Marzetti and Ryan Kyle from the BCPWA society. The authors are indebted to all the members of the British Columbia PWA society who participated in this survey.References1. Brashers DE, Neidig JL, Cardillo LW, Dobbs LK, Russell JA, Haas SM:"In an important way, I did die": Uncertainty and revival inpersons living with HIV. AIDS Care 1999, 11:201-219.2. Palella FJ Jr, Delaney KM, Moorman AC, Loveless MO, Fuhrer J, Sut-ten GA, Aschman PJ, Holmberg SD: Declining morbidity andmortality among patients with advanced HIV infection. 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Grubb I, McClure C: Back to the future: A feasibility study on return-to-work programming for people living with HIV/AIDS Toronto, ON: AIDSCommittee of Toronto; 1997. 9. HIV and AIDS Legal Clinic (Ontario): Working and the new ODSP. [Bro-chure] Toronto 1998.10. Crystal S, Fleishman JA, Hays RD, Shapiro MF, Bozzette SA: Physicaland Role Functioning among Persons with HIV: Results froma Nationally Representative Survey. Med Care 2000,38:1210-1223.11. World Health Organization: International Classification ofFunctioning, Disability and Health  2001 [http://www3.who.int/icf/icftemplate.cfm].12. World Health Organization: International Classification of Impairments,Disabilities and Hanidcaps. Geneva 1980.13. Lehman CA: Idiopathic intracranial hypertension within theICF model: a review of the literature. J Neurosci Nurse 2003,35:263-269.14. Simeonsson RJ, Leonardi M, Lollar D, Bjorck-Akesson E, HollenwegerJ, Martinuzzi A: Applying the International Classification ofFunctioning, Disability and Health (ICF) to measure child-hood disability. Disabil Rehabil 2003, 25:602-610.15. Seltser R, Dicowden MA, Hendershot GE: Terrorism and theinternational classification of functioning, disability andhealth: a speculative case study based on the terroristattacks on New York and Washington. Disabil Rehabil 2003,25:635-643.16. Nixon S, Cott CA: "Shifting Perspectives": ReconceptualizingPage 9 of 10(page number not for citation purposes)participated in the design of the study and the develop-ment of the study instrument; PB participated in the con-HIV Disease in a Rehabilitation Framework. PhysiotherapyCanada 2000, 52:189-197.Publish with BioMed Central   and  every scientist can read your work free of charge"BioMed Central will be the most significant development for disseminating the results of biomedical research in our lifetime."Sir Paul Nurse, Cancer Research UKYour research papers will be:available free of charge to the entire biomedical communitypeer reviewed and published immediately upon acceptancecited in PubMed and archived on PubMed Central Health and Quality of Life Outcomes 2004, 2:46 http://www.hqlo.com/content/2/1/4617. Canadian Working Group on HIV and Rehabilitation  [http://www.hivandrehab.ca]18. Lehmann JF, DeLisa JA, Warren CG, deLateur BJ, Sand Bryant PL,Nicholson CG: Cancer Rehabilitation: Assessment of Need,Development, and Evaluation of a Model of Care. Arch PhysMed Rehabil 1978, 59:410-419.19. Fialka-Moser V, Crevenna R, Korpan M, Quittan M: Cancer Reha-bilitation. Particularly with aspects on physical impairments.J Rehabil Med 2003, 35:153-162.20. Rusch M, Nixon S, Schilder A, Braitstein P, Chan K, Hogg RS: Preva-lence of activity limitation among persons living with HIV inBritish Columbia. CJPH  in press.21. Cruess DG, Evans DL, Repetto MJ, Gettes D, Douglas SD, Petitto JM:Prevalence, diagnosis and pharmacological treatment ofmood disorders in HIV disease. Biol Psychiatry 2003, 54:307-316.22. Bing EG, Burnam A, Longshore D, Fleishman JA, Sherbourne CD,London AS, Turner BJ, Eggan F, Beckman R, Vitiello B, Morton SC,Orlando M, Bozzette SA, Ortiz-Barron L, Shapiro M: PsychiatricDisorders and Drug Use Among Human ImmunodeficiencyVirus-Infected Adults in the United States. Arch Gen Psychiatry2001, 58:721-728.23. Rogers G, Curry M, Oddy J, Pratt N, Beilby J, Wilkinson D: Depres-sive disorders and unprotected casual anal sex among Aus-tralian homosexually active men in primary care. HIV Med2003, 4:271-275.24. Perdue T, Hagan H, Thiede H, Valleroy L: Depression and HIV riskbehavior among Seattle-area injection drug users and youngmen who have sex with men. AIDS Educ Prev 2003, 15:81-92.25. Heath KV, Cornelisse PG, Strathdee SA, Palepu A, Miller ML, Schech-ter MT, O'Shaughnessy MV, Hogg RS: HIV-associated risk factorsamong young Canadian Aboriginal and non-Aboriginal menwho have sex with men. Int J STD AIDS 1999, 10:582-587.26. Honn V, Bornstein R: Social support, neuropsychological per-formance, and depression in HIV infection. J Internat NeuropsychSociety 2002, 8:436-447.27. British Columbia Centre for Disease Control: STD/AIDS ControlAnnual Report. Vancouver 2001.yours — you keep the copyrightSubmit your manuscript here:http://www.biomedcentral.com/info/publishing_adv.aspBioMedcentralPage 10 of 10(page number not for citation purposes)


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