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Comparing the content of participation instruments using the International Classification of Functioning,… Noonan, Vanessa K; Kopec, Jacek A; Noreau, Luc; Singer, Joel; Chan, Anna; Mâsse, Louise C; Dvorak, Marcel F Nov 13, 2009

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ralssBioMed CentHealth and Quality of Life OutcomesOpen AcceResearchComparing the content of participation instruments using the International Classification of Functioning, Disability and HealthVanessa K Noonan*1,2, Jacek A Kopec2,3, Luc Noreau4,5, Joel Singer2,6, Anna Chan1, Louise C Mâsse7 and Marcel F Dvorak1Address: 1Division of Spine, Department of Orthopaedics, University of British Columbia, Vancouver, BC, Canada, 2School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada, 3Arthritis Research Centre of Canada, Vancouver, BC, Canada, 4Rehabilitation Department, Laval University, Québec City, QC, Canada, 5Centre for Interdisciplinary Research in Rehabilitation and Social Integration, Québec City, QC, Canada, 6Canadian HIV Trials Network, Vancouver, BC, Canada and 7Department of Pediatrics, University of British Columbia, Vancouver, BC, CanadaEmail: Vanessa K Noonan* - Vanessa.Noonan@vch.ca; Jacek A Kopec - jkopec@arthritisresearch.ca; Luc Noreau - luc.noreau@rea.ulaval.ca; Joel Singer - joel.singer@ubc.ca; Anna Chan - annachan100@gmail.com; Louise C Mâsse - lmasse@cw.bc.ca; Marcel F Dvorak - marcel.dvorak@vch.ca* Corresponding author    AbstractBackground: The concept of participation is recognized as an important rehabilitation outcomeand instruments have been developed to measure participation using the InternationalClassification of Functioning, Disability and Health (ICF). To date, few studies have examined thecontent of these instruments to determine how participation has been operationalized. Thepurpose of this study was to compare the content of participation instruments using the ICFclassification.Methods: A systematic literature search was conducted to identify instruments that assessparticipation according to the ICF. Instruments were considered to assess participation and wereincluded if the domains contain content from a minimum of three ICF chapters ranging fromChapter 3 Communication to Chapter 9 Community, social and civic life in the activities and participationcomponent. The instrument content was examined by first identifying the meaningful concepts ineach question and then linking these concepts to ICF categories. The content analysis includedreporting the 1) ICF chapters (domains) covered in the activities and participation component, 2)relevance of the meaningful concepts to the activities and participation component and 3) contextin which the activities and participation component categories are evaluated.Results: Eight instruments were included: Impact on Participation and Autonomy, KeeleAssessment of Participation, Participation Survey/Mobility, Participation Measure-Post Acute Care,Participation Objective Participation Subjective, Participation Scale (P-Scale), Rating of PerceivedParticipation and World Health Organization Disability Assessment Schedule II (WHODAS II).1351 meaningful concepts were identified in the eight instruments. There are differences amongthe instruments regarding how participation is operationalized. All the instruments cover six toeight of the nine chapters in the activities and participation component. The P-Scale and WHODASPublished: 13 November 2009Health and Quality of Life Outcomes 2009, 7:93 doi:10.1186/1477-7525-7-93Received: 31 March 2009Accepted: 13 November 2009This article is available from: http://www.hqlo.com/content/7/1/93© 2009 Noonan 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 12(page number not for citation purposes)II have questions which do not contain any meaningful concepts related to the activities andHealth and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93participation component. Differences were also observed in how other ICF components (bodyfunctions, environmental factors) and health are operationalized in the instruments.Conclusion: Linking the meaningful concepts in the participation instruments to the ICFclassification provided an objective and comprehensive method for analyzing the content. Thecontent analysis revealed differences in how the concept of participation is operationalized andthese differences should be considered when selecting an instrument.BackgroundParticipation is cited as central to a person's quality of lifeand well-being [1]. The reduction of disabilities andimproving participation for individuals with disabilitiesare therefore important goals of rehabilitation [2]. Work-ing for pay, attending school and joining in communityactivities are all examples of life situations that compriseparticipation. Participation is defined in the InternationalClassification of Functioning, Disability and Health (ICF)as the 'involvement in a life situation' and participationrestrictions are defined as 'problems an individual mayexperience in the involvement in life situations' [3].Although the idea of participation is not new, participa-tion as defined in the ICF is a relatively new concept andas a result the conceptualization and measurement of par-ticipation continues to evolve [4].Whiteneck [5] in his critique of the ICF recommendedthat new instruments operationalizing the concepts in theICF be developed and tested to assess the relationshipamong the concepts in the ICF model. Instruments shouldbe pure measures and not contain content from other ICFconcepts if the intent is to examine the relationshipamong the concepts in the ICF model [6]. Furthermore, ifinstruments are to be used to evaluate treatment effectsthen the content of the individual questions must beclearly understood since there is a chance of not capturingthe effect if multiple outcomes are assessed [6]. It is there-fore necessary to identify participation instruments devel-oped using the ICF and then examine the content todetermine how the concept of participation has beenoperationalized and if content pertaining to other con-cepts is included.In 2003 Perenboom and Chorus [2] reviewed the litera-ture and examined how existing generic instrumentsassess participation according to the ICF. These authorsconcluded that most of the instruments evaluate one ormore domains related to participation but none of themmeasure all the domains [2]. Since Perenboom and Cho-rus [2] conducted their review, new instruments havebeen developed using the ICF. A preliminary version ofthe ICF was published in 1997 and the first version waspublished in 2001, as a result few of the instrumentsbased on the ICF model. The methodology for linkingcontent of instruments to the ICF classification has beendeveloped [7,8] and this methodology is recommendedsince it provides a standardized framework for evaluatingcontent [9]. To date, this methodology has been used tocompare the content of both generic and disease-specificinstruments [9,10]. The purpose of this study was to buildon the work by Perenboom and Chorus [2] and examinethe content of instruments measuring participationaccording to the ICF using the published methodology.MethodsConcept of ParticipationIn the ICF model the concepts of activity and participationare differentiated, but in the classification these conceptsare combined and there is a single list of domains cover-ing various actions and life areas. The user is providedwith four options on how activity and participation can beconsidered: 1) divide activity and participation domainsand do not allow for any overlap; 2) allow for partial over-lap between activity and participation domains; 3) opera-tionalize participation as broad categories within thedomains and activity as the more detailed categories, witheither partial or no overlap; and 4) allow for completeoverlap in the domains considered to be activity and par-ticipation [3]. Similarly, in the literature there is no con-sensus regarding how activity is differentiated fromparticipation [2,5,11-14]. Some have suggested that par-ticipation comprises life roles [2] whereas others haveused multiple criteria to differentiate these concepts [5].In this study option number one (described above) wasselected to differentiate these two concepts. The followingICF domains (or chapter headings) were considered rele-vant to the concept of participation: Communication;Mobility; Self-care; Domestic life; Interpersonal interactionsand relationships; Major life areas; and Community, social andcivic life (Chapters 3 to 9 respectively). For the purpose ofthis study, chapter headings were used instead of inter-preting the individual questions according to criteria sinceit was felt to be more objective. Chapter 1 Learning andapplying knowledge and Chapter 2 General tasks and demandscover content primarily related to the ICF concept of activ-ity, defined as 'execution of a task or action by an individ-Page 2 of 12(page number not for citation purposes)included in the Perenboom and Chorus [2] review were ual' [3] and were therefore not included.Health and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93InstrumentsA systematic search of seven databases [Medline; CINAHL;EMBASE; HaPI; Psyc (Info, Articles, Books)] was con-ducted to identify all the instruments that assess participa-tion and were based on the ICIDH-2 or ICF model. TheICIDH-2 was first released in 1997 and so the searchincluded articles published between 1997 and March2008. Instruments including domains covering a mini-mum of three chapters in the ICIDH-2 participationdimension, or three chapters from the ICF Chapters 3 to 9in the activities and participation component, were con-sidered to assess participation. A minimum of threeICIDH-2 participation dimensions or three ICF chapterswere required in order to exclude specific instruments(e.g. employment instruments).Instruments which met this definition of participationwere then included if they were designed to assess partici-pation in the community, either self-administered orinterview administered, generic in content, developed foradults and published in English. A list of the search termsis provided in the Appendix.Linking to the ICF ClassificationFor each instrument all questions were assigned ICF cate-gories or codes, also known as linking or cross-walking.First the content contained within each of the questionsand, if applicable, response options (response scale) wereidentified using standardized linking rules [8]. This con-tent is referred to as the meaningful concept(s) in the pub-lished methodology [8]. The meaningful concept(s)capture all of the ideas or information contained within aquestion and these concepts are used to select the ICF cat-egories in the classification.The ICF consists of two parts: functioning and disabilityand contextual factors. Functioning and disability con-tains the following components: body structures, bodyfunctions, and activity and participation. Contextual fac-tors comprise the background of a person's life and livingwhich interact with the individual and determine theirlevel of functioning [3]. They include environmental andpersonal factors. Environmental factors include the phys-ical, social and attitudinal environment in which peoplelive [3]. These factors are external to individuals and canhave a positive or negative influence on an individual'sperformance as a member of society, on an individual'scapacity to execute actions or tasks, or on an individual'sbody functions or structures [3]. Personal factors are theparticular details of an individual's life and include factorssuch as gender, age and coping style [3]. A detailed classi-fication of environmental factors was first introduced inthe ICF and currently a classification does not exist for per-using the World Health Organization's etiological classifi-cation, the International Classification of Diseases-10(ICD-10) [3].To determine if contextual factors and health conditionsare included in the participation instruments, relevantinformation stated in the instructions was also used toidentify meaningful concepts, which is a modification tothe published linking rules. For example, if the instruc-tions state the respondent should consider the impact ofhis or her health condition or the use of assistive deviceswhen thinking about participating in certain life roles,then 'health conditions' and 'assistive devices' wereincluded as meaningful concepts for each question. Themeaningful concepts in the instructions were included foreach question since a person should consider the instruc-tions when answering each question and it also ensuresthe content is comparable among the instruments.Any terms referring to a time period (e.g. in the past fourweeks) and qualifiers such as 'difficulty', 'satisfaction' or'importance' were not considered to be meaningful con-cepts. To ensure the meaning of each question was cap-tured, meaningful concepts could be repeated within theinstruments; as an example, if an instrument has five to sixquestions which are related to each aspect of participation(e.g. dressing) then 'dressing' was considered a meaning-ful concept in each of the six questions to determine howmany questions ask about dressing. If examples are usedto describe an aspect of participation then all the exam-ples were coded as meaningful concepts and linked to ICFcategories. Meaningful concepts were also identified inscreening questions since these questions ask aboutaspects of participation.The ICF classification was then used to assign ICF catego-ries to the meaningful concepts. In the ICF classificationthe components are labeled with letters: body structures(s), body functions (b), activity and participation (d), andenvironmental factors (e). As mentioned previously, per-sonal factors are not specified. Within each component inthe ICF, the categories are organized hierarchically andassigned a numeric code. The categories are nested so thechapters also referred to as domains, include all thedetailed subcategories. An example demonstrating thecoding from the activities and participation component isd5 Self-care (chapter/first-level category), d540 Dressing(second-level category) and d5400 Putting on clothes(third-level category). The ICF classification allows themeaningful concepts to be linked to very detailed catego-ries and the categories can be rounded up to examine cov-erage in broad aspects of participation.Page 3 of 12(page number not for citation purposes)sonal factors. In addition, the ICF model includes thehealth condition (disorder or disease) which is classifiedThe meaningful concepts were linked to the most preciseICF category, ranging from the chapter (1 digit code) toHealth and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93the fourth-level (5 digit code). According to the publishedlinking rules [8], the 'other specified' and the 'unspecified'ICF categories should not be used. The meaningful con-cept was coded as 'not definable' if there was not enoughinformation to select the most precise ICF category and ifa meaningful concept was not included in the ICF (e.g.suicide attempts) it was coded as 'not covered' [8]. Ameaningful concept was coded as a 'personal factor' if itasks about age or other factors that relate to the back-ground of the person. Meaningful concepts such ashealth, illness or physical disability were coded as 'healthcondition'. Examples of the meaningful conceptsextracted from the questions and the assigned ICF catego-ries and codes are provided in Table 1. One coder was pri-marily responsible for determining the meaningfulconcepts and two coders linked the meaningful conceptsin the instruments. The results were compared and thecoders discussed the questions where different ICF catego-ries were selected. Another coder was consulted if therewere any questions regarding the meaningful concepts,ICF categories or codes and made the final decisions. Allthe coders were familiar with the ICF and the linking rules[8].AnalysisFirst a descriptive analysis was conducted. The totalnumber of meaningful concepts linked to categories inthe ICF components (activities and participation; bodyfunctions; body structures; environmental factors) andthe number of meaningful concepts which could not belinked (coded as not defined, not covered, health condi-tion) were counted for each instrument. In the analysesthe third- and fourth-level categories were rounded upand reported as second-level ICF categories. The percent-tially selected for the meaningful concepts in each instru-ment and did not consider any revisions made by thethird coder.Second, the content of each instrument was examined.Since there is no consensus on how to operationalize par-ticipation, for the content analysis participation wasdefined broadly and included all domains within theactivities and participation component. The content ineach of the instruments was examined by reporting the: 1)coverage of the ICF chapters (domains) within the activi-ties and participation component; 2) relevance of themeaningful concepts to the activities and participationcomponent; and 3) context in which the activities andparticipation component categories are evaluated. Cover-age was examined by calculating the number of activitiesand participation component domains included in eachinstrument and the percentage of questions containingICF categories from the activities and participation com-ponent. Relevance was examined by determining if all thequestions contain a meaningful concept linked to theactivities and participation component (d-category).Since an instrument may contain meaningful concept(s)related to participation but an ICF category could not beselected, meaningful concepts coded as 'not defined' and'not covered' were reviewed by one of the coders to deter-mine if the meaningful concepts were similar to the con-tent included in the activities and participation domainsd1 Learning and applying knowledge through to d9 Commu-nity, social and civic life. Finally, to determine the contextin which the activities and participation categories wereevaluated, the percentage of questions containing ICF cat-egories from the ICF components (body functions, bodystructures, environmental factors, personal factors) as wellTable 1: Examples of linking questions to ICF categories and codesQuestion Meaningful Concept ICF Category or Code AssignedDuring the past 4 weeks, I have moved around in my home, as and when I have wanted to.moving around in my home d4600 Moving around within the homeIt does not matter if you require the help of other people or from gadgets and machines.*(KAP)assistance from others e3 Support and relationships use of gadgets/machines e120 Products and technology for personal indoor and outdoor mobility and transportationIn the last 30 days how much difficulty did you have in dealing with people you do not know.dealing with strangers d730 Relating with strangersThis questionnaire asks about difficulties due to health conditions.*(WHODAS II)health condition health conditionAbbreviations:KAP, Keele Assessment of Participation; WHODAS II, World Health Organization Disability Assessment Schedule IINotes:* the text in italics are the instructions for the instrument and the relevant information that was included as meaningful concepts and coded.Page 4 of 12(page number not for citation purposes)age of agreement between the two coders was calculatedfor the first- and second-level ICF categories and codes ini-as those coded as 'health conditions' and 'not defined/notcovered' were reported.Health and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93ResultsIdentification of the Participation InstrumentsA review of the literature in September 2007 identified3087 articles. After reviewing the articles based on the twostage eligibility process ten instruments were included:Impact on Participation Autonomy (IPA) [15,16], KeeleAssessment of Participation (KAP) [17], PAR-PRO [18],Participation Measure-Post Acute Care (PM-PAC) [19],Participation Objective Participation Subjective (POPS)[20], Participation Scale (P-Scale) [21], Participation Sur-vey/Mobility (PARTS/M) [22], Perceived Impact of Prob-lem Profile (PIPP) [23], Rating of Perceived Participation(ROPP) [24], and World Health Organization DisabilityAssessment Schedule II (WHODAS II) [25]. The Participa-tion Measure-Post Acute Care-Computerized AdaptiveTest version (PM-PAC-CAT) [26] was added when the sys-tematic search was updated in March 2008. For eight ofthe instruments (IPA, KAP, PARTS/M, PM-PAC, POPS, P-Scale, ROPP, WHODAS II) a copy of the instrument wasavailable and so these instruments were included in thecontent analysis.Linking the Meaningful Concepts to the ICFA total of 1351 meaningful concepts were identified in theeight instruments. In the P-Scale there are a total of 36questions, however only 18 questions were assessed inthis study since the meaningful concepts are not explicitlystated in 18 questions which ask 'how big a problem is itto you?' and follows the first question. In addition, therewas no impact on the results by only including 18 ques-tions from the P-Scale. The percentage of observed agree-ment between the two coders ranged between 91% (P-Scale) to 100% (ROPP) for the first-level ICF categoriesand codes and 77% (P-Scale) to 95% (ROPP) for the sec-ond-level ICF categories and codes. Level of agreementcould not be reported for the IPA since this instrumentwas linked to the ICF classification using a similar meth-odology by the same coders in a previous study but coderagreement was not assessed.The PARTS/M has the highest number of meaningful con-cepts (n = 545). Sixty nine percent (933/1351) of themeaningful concepts were linked to categories in the com-ponent activities and participation (see Table 2). Nomeaningful concepts were linked to personal factors. Thecategories from the activities and participation compo-nent that were coded based on the meaningful conceptsare included as an Additional file (see Additional file 1:ICF categories in the component activities and participa-tion based on the meaningful concepts). All of the instru-ments contain meaningful concepts linked to categoriesin the following activities and participation domains: d4Mobility, d6 Domestic life, d7 Interpersonal interactions andrelationships, d8 Major life areas and d9 Community, socialand civic life. The categories within the ICF componentsbody functions (b-categories) and environmental factors(e-categories) coded based on the meaningful conceptsare included as an Additional file (see Additional file 2:ICF categories in the components body functions andenvironmental factors based on the meaningful con-cepts). Since the number of questions in each instrumentvaries, the number of questions (as well as a percentage ofthe total number of questions) that contain meaningfulconcepts linked to categories in the ICF components aswell as the codes for meaningful concepts that could notbe linked were calculated [see Additional file 3: Numberof questions with ICF categories and codes (%)]. A sum-mary of the results based on the criteria used to examinethe instrument content is described in Table 3.Overview of the Content in the Participation InstrumentsImpact on Participation and Autonomy (IPA)The IPA contains 41 questions and 206 meaningful con-cepts. The activities and participation domains d6 Domes-tic life, d7 Interpersonal interactions and relationships, d8Major life areas have the most coverage, with 22% of ques-tions (n = 9 questions) covering each domain. In the IPAmany questions ask the respondent to consider the use ofassistance or the use of aids and these meaningful con-Table 2: Summary of the data abstracted from the participation instrumentsIPA KAP PARTS/M PM-PAC POPS P-Scale ROPP WHODAS IINumber of meaningful concepts linked to ICF categories 122 49 479 117 144 47 153 42Body function 40 1 3Activity/Participation 56 27 379 103 135 42 153 38Environmental factors 66 22 60 14 9 4 1Number of meaningful concepts not linked to ICF categories84 66 9 39Health conditions 82 40 2 36Not defined or notcovered2 26 7 3Abbreviations:Page 5 of 12(page number not for citation purposes)IPA, Impact on Participation and Autonomy; KAP, Keele Assessment of Participation; PARTS/M, Participation Survey/Mobility; PM-PAC, Participation Measure-Post Acute Care; POPS, Participation Objective Participation Subjective; P-Scale, Participation Scale; ROPP, Rating of Perceived Participation; WHODAS II, World Health Organization Disability Assessment Schedule IIHealth and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93cepts were linked to categories in the environmental factordomains e3 Support and relationships and e1 Products andtechnology, respectively. There were 84 meaningful conceptsin the IPA which could not be linked to the ICF. Theinstructions in the IPA ask the respondent to consider allthe questions in the context of their 'health' or 'disability'and both of these were considered meaningful conceptsand were linked to 'health conditions'. The meaningfulconcept coded as 'not covered' was 'living life' and theconcept considered 'not defined' was 'personal life', whichis stated in the preface to this question. All the questionsin the IPA have at least one meaningful concept related tod4 Mobility through to d9 Community, social and civic life.Keele Assessment of Participation (KAP)The KAP instrument contains a total of 15 questions,including the screening questions, and 49 meaningfulconcepts were linked to the ICF classification. Meaningfulconcepts were linked to d3 Communication through to d9Community, social and civic life. The activities and participa-tion domains d6 Domestic life and d8 Major life areas havethe greatest coverage, with 27% (n = 4 questions) and33% (n = 5 questions) of questions covering eachdomain, respectively. The instructions in the KAP tell therespondent to consider the 'use of assistance' or the 'use ofingful concepts were identified and linked. All of themeaningful concepts were linked to ICF categories andeach question contains an ICF category from d3 Communi-cation through to d9 Community, social and civic life.Participation Measure-Post Acute Care (PM-PAC)The PM-PAC instrument contains 51 questions. One hun-dred and twenty six meaningful concepts were identifiedand 117 of these were linked to the ICF. The PM-PAC hastwo questions which ask about 'filing your taxes' and'completing forms for insurance or disability benefits'where the instructions ask the respondent to consider anyassistance (e3 Support and relationships) or services (e5 Serv-ices, systems and policies) available to them. There are alsomeaningful concepts which were coded as 'not defined',for example 'other activities' and 'days away from yourhome'. Although the PM-PAC has questions which do notcontain any ICF categories from domains in the activitiesand participation component, there is at least one mean-ingful concept in each question related to these domains.Examples of meaningful concepts which were coded as'not defined' or 'not covered' but considered related to theconcept of participation include 'days away from yourhome', 'accomplishing tasks', 'filing taxes' and 'complet-ing forms for insurance or disability benefits'.Table 3: Summary of the criteria used to assess the content of the participation instrumentsInstrument Criteria #1: Criteria #2: Criteria #3:Activities and participation domains* coveredAll questions contain categories in the ICF activities and participation componentQuestions contain meaningful concepts related to: body functions; body structures; environmental factors; personal factors; health conditionIPA d4 to d9 yes environmental factors; health conditionKAP d3 to d9 yes environmental factorsPARTS/M d4 to d9 yes body functions; environmental factors; health conditionPM-PAC d3 to d9 yes† environmental factors; health conditionPOPS d3, d4, d6 to d9 yes environmental factorsP-Scale d1, d3 to d9 no body functions; environmental factorsROPP d3 to d9 yes noneWHODAS II d1, d3 to d9 no† body functions; environmental factors; health conditionAbbreviations:IPA, Impact on Participation and Autonomy; KAP, Keele Assessment of Participation; PARTS/M, Participation Survey/Mobility; PM-PAC, Participation Measure-Post Acute Care; POPS, Participation Objective Participation Subjective; P-Scale, Participation Scale; ROPP, Rating of Perceived Participation; WHODAS II, World Health Organization Disability Assessment Schedule IINotes:* d1 Learning and applying knowledge; d2 General tasks and demands; d3 Communication; d4 Mobility; d5 Self-care; d6 Domestic life; d7 Interpersonal interactions and relationships; d8 Major life areas; d9 Community, social and civic life† Contains 'not defined' or 'not covered' codes that are considered to be similar in content to the domains d1 to d9 in the activities and participation component.Page 6 of 12(page number not for citation purposes)products and technology' and e-categories for these mean-Health and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93Participation Objective Participation Subjective (POPS)The POPS contains 78 questions and all of the 144 mean-ingful concepts identified could be linked to the ICF clas-sification. The meaningful concepts primarily cover thedomains d6 Domestic life through d9 Community, social andcivic life. Six meaningful concepts were linked to d350Conservation in the domain d3 Communication and themeaningful concepts in d4 Mobility are all related to trans-portation (d470 Using transportation and d475 Driving). Allof the questions contain meaningful concepts linked todomains in the activities and participation component.The meaningful concept 'using a phone' was identified innine questions asking about socialization and coded as anenvironmental factor (e125 Products and technology forcommunication). Neither the instructions nor the ques-tions asked the respondent to consider his or her healthcondition when considering aspects of participation.Participation Scale (P-Scale)The P-Scale contains 36 questions, however, in this studyonly 18 questions were considered since the meaningfulconcepts are not explicitly stated in 18 questions whichask 'how big a problem is it to you?'. A total of 47 mean-ingful concepts were identified and all the concepts werelinked to the ICF classification. The meaningful conceptscover all of the activities and participation domains withthe exception of d2 General tasks and demands. One mean-ingful concept, 'confidence' was linked to body functions(b126 Temperament and personality functions). There arethree questions with meaningful concepts asking aboutattitudes (e4 Attitudes). The P-Scale has one question, 'Inyour home, are the eating utensils you use kept with thoseused by the rest of the household?', where the meaningfulconcepts are only related to environmental factors; themeaningful concepts 'eating utensils' and 'attitudes offamily members' were linked to the ICF categories 'e115Products and technology for personal use in daily living' and'e410 Individual attitudes of immediate family members'. Thisquestion seems to ask about the observable consequencesof others' attitudes and so it was not considered to berelated to the concept of participation. It is the only ques-tion which did not have a meaningful concept related tothe domains in the activities and participation compo-nent. None of the questions include meaningful conceptsrelated to 'health condition'Participation Survey/Mobility (PARTS/M)The PARTS/M has a total of 159 questions, includingscreening questions. There are a total of 545 meaningfulconcepts and 479 of these could be linked to the ICF clas-sification. Meaningful concepts in the PARTS/M werelinked to ICF categories in d3 Communication through tod9 Community, social and civic life and each question had athe PARTS/M, for each of the 20 aspects of participationincluded there is a question which asks if either 'pain'(b280 Sensation of pain) or 'fatigue' (b4552 Fatiguability)limits participation. There are also questions which askabout the use of 'assistance', 'adaptations' or 'specialequipment' and these meaningful concepts were linked toe-categories within the ICF component environmentalfactors. Meaningful concepts which could not be linked tothe ICF included concepts such as 'use of accommoda-tions' and 'physical impairment' and were each coded as'not defined' and 'health condition', respectively.Rating of Perceived Participation (ROPP)The ROPP contains 69 questions and 153 meaningfulconcepts. All of the meaningful concepts were linked to d3Communication through to d9 Community, social and civiclife and each question contains a minimum of at least onemeaningful concept from these domains. Categories inthe domain d8 Major life areas have the most coverage,with 22% of questions (n = 15 questions) containing ICFcategories from this domain. There were no meaningfulconcepts linked to the ICF components body functions/structures or environmental factors and all of the mean-ingful concepts could be linked.World Health Organization Disability Assessment Schedule II (WHODAS II)The WHODAS II contains 36 questions and a total of 81meaningful concepts. Forty-two meaningful conceptswere linked to the ICF classification. The meaningful con-cepts covered all of the activities and participationdomains with the exception of d2 General tasks anddemands. Meaningful concepts were also linked to bodyfunctions as well as environmental factors. In terms ofbody functions, three questions which ask about 'remem-bering to do important things', 'being emotionallyaffected' and 'living with dignity', were linked to b144Memory functions, b152 Emotional functions and b1Mentalfunctions, respectively. There were 39 meaningful conceptswhich could not be linked to the ICF classification.Instructions in the WHODAS II state the respondentshould consider his or her health for each question, result-ing in 36 'health condition' codes. Three meaningful con-cepts were considered to be 'not defined' ('staying byyourself for a few days') or 'not covered' ('impact on yourfamily'). In the WHODAS II there are five questions whichdo not contain any categories in the activities and partici-pation domains and were also not considered to berelated to participation; these questions include meaning-ful concepts related to body functions (b1 Mental func-tions, b144 Memory functions, b152 Emotional functions),'not covered' ('impact on your family') or 'not defined'('barriers or hindrances in the world around you').Page 7 of 12(page number not for citation purposes)minimum of one d-category from these ICF domains. InHealth and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93DiscussionConcept of ParticipationBy linking the meaningful concepts identified in the par-ticipation instruments, it was possible to determine whichICF categories the instruments include. In this study aninstrument was considered to assess the concept of partic-ipation and included if its domains cover a minimum ofthree chapters (domains) between d3 Communication andd9 Community, social and civic life in the ICF componentactivities and participation. This broad definition of par-ticipation was used since there is no consensus regardinghow activity is differentiated from participation [2,5,11-14] and selecting chapter headings provided objective cri-teria. In considering which activities and participationdomains the instruments cover, an even broader defini-tion of participation was used by also including d1 Learn-ing and applying knowledge and d2 General tasks anddemands since these domains may have been consideredrelevant to the concept of participation by the instrumentdevelopers. Perenboom and Chorus [2], however, consid-ered a question to be assessing participation if it asksabout "actual or perceived participation (involvement,autonomy, social role)" (page 578) and so differentresults would be obtained using this definition.Content of the Participation InstrumentsAlthough all the instruments cover six to eight of the nineactivities and participation domains, there are differencesin the actual content. All of the instruments include con-tent from domains d6 Domestic life, d7 Interpersonal inter-actions and relationships, d8 Major life areas and d9Community, social and civic life. However, there are differ-ences in whether the domains d3 Communication, d5 Self-care and certain aspects of d4 Mobility are consideredaspects of participation.Four instruments (PM-PAC, P-Scale, ROPP, WHODAS II)intend to assess d3 Communication based on the materialsdescribing their development and ICF categories from d3Communication were noted for all these instruments.Meaningful concepts linked to categories in d3 Communi-cation were also identified in the KAP and POPS which islikely not the major focus, as the questions have meaning-ful concepts linked to multiple ICF domains. For example,in the POPS the question 'How many times do you speakwith your neighbour?' includes the meaningful concept'conversation' which was coded as d350 Conversation butit is only a minor meaningful concept and the majormeaningful concept is 'relationship with neighbour(s)',coded as d7501 Informal relationships with neighbours. Insome instruments, such as the PM-PAC, assessing com-munication is a major focus ('How much are you limitedin watching or listening to the television or radio?').[15,17] and this may be a result of overlapping content. Infuture studies it may be beneficial to identify and code themajor and minor meaningful concepts, since this couldassist with developing a priori hypotheses regardingexpected correlations between instrument domains.All of the instruments contain meaningful conceptslinked to categories in d5 Self-care with the exception ofthe POPS. When the POPS was developed self-care wasnot included since participation was operationalized as"engagement in activities that are intrinsically social, thatare part of household or other occupational role function-ing, or that are recreational activities occurring in commu-nity settings" (page 463) and self-care did not qualify[20]. The PM-PAC does not intend to assess self-care [19]but there were two meaningful concepts linked to d5 Self-care. One question in the PM-PAC asks about 'exercising'which was coded as d5701Managing diet and fitness andthe other question asks about 'providing self-care to your-self', which was coded as d5 Self-care. In terms of mobility,all of the instruments contain meaningful concepts linkedto categories in d4 Mobility and all the instruments intendto include content from this domain. Three instruments(IPA, PARTS/M, WHODAS II) operationalize moving inthe home using specific phrases such as 'getting out ofbed', 'getting out of a chair' (PARTS/M) or 'getting up andgoing to bed' (IPA). In the other instruments, mobilityincludes broader statements such as 'moving or gettingaround the home' (KAP, PM-PAC, P-Scale, ROPP) and inthe POPS mobility includes only using transportation.Two instruments, the P-Scale and WHODAS II, were con-sidered to have content not related to the concept of par-ticipation, which was defined broadly as ICF categories inthe activities and participation domains d1 Learning andapplying knowledge to d9 Community, social and civic life.The P-Scale has one question which only asks about theobservable attitudes of others ('In your home, are the eat-ing utensils you use kept with those used by the rest of thehousehold?'). The WHODAS II contains five questionswhich ask about content related to body functions (e.g.'remembering' which was linked to b144 Memory func-tions) or were not covered/not defined (e.g. 'barriers orhindrances in the world around you'). By linking themeaningful concepts to the ICF classification it was evi-dent that not all questions appear to assess participationas defined in the ICF. This information may assist users inunderstanding what the questions assess and aid in select-ing an instrument depending on his or her purpose, sincethis may or may not be an issue.Linking the Meaningful Concepts to the ICFThe methodology published by Cieza et al. [7] was usedPage 8 of 12(page number not for citation purposes)Empirical findings suggest that it is difficult to demon-strate discriminant validity among participation domainsto identify and link meaningful concepts to the ICF. Ourresults for the activities and participation codes for theHealth and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93WHODAS II can be compared to a study by Cieza andStucki [10], which also linked the WHODAS II to the ICF.It is difficult to compare the results from these two studiesdirectly since Cieza and Stucki [10] used an older versionof the linking rules [7] and we modified the linking rulesby including 'health condition' as a meaningful concept ifit was included in the instructions. Cieza and Stucki [10]identified 38 meaningful concepts and in our study wehad 45 not including coding 'health condition', however,we did not include the five questions in the WHODAS IIon general health and it appears that Cieza and Stucki [10]did. Both studies had the same number of meaningfulconcepts linked to body functions (n = 3), environmentalfactors (n = 1) and 'not defined' (n = 2). There were somedifferences. We linked 38 meaningful concepts to catego-ries from activities and participation and Cieza and Stucki[10] linked 30 meaningful concepts and we linked onemeaningful concept to 'not covered' whereas theseauthors linked two meaningful concepts.The implications of not reliably determining if the mean-ingful concepts can be linked to the ICF classification ordifferences in the ICF categories and codes selected canimpact the results and how the questions in the instru-ments are interpreted. It has been recognized that thereare a number of challenges with using the linking rules(e.g. establishing the meaningful concepts contained inthe assessment items) [27]. Offering on-line training onhow to use the ICF linking rules and presenting difficultcoding examples are types of initiatives that could helpimprove the standardization of this methodology.Participation and Other ICF Categories and CodesMeaningful concepts included in the instructions as wellas within each question were examined to determine thecontext in which aspects of participation are assessed. TheICF states that disability is a dynamic process whichresults from the interaction of the ICF components (bodystructures, body functions, activities and participation)and the contextual factors (environment, personal fac-tors) [3]. It is helpful to identify what is asked in relationto participation; for example, for every participation topicarea (e.g. dressing, working inside the home) included inthe PARTS/M, a question is asked if participation isimpacted by pain and/or fatigue. Clinically it is useful todetermine the impact of factors such as pain and fatigue,since similar to environmental factors they can be poten-tially modified in order to enhance participation.As stated by Nordenfelt [13] and others [28], activity andparticipation must occur in an environment. In the ICFthere is reference to a 'standard environment' versus 'usualenvironment' and this distinction is one way activity isment are included in some instruments (IPA, KAP,PARTS/M, PM-PAC, POPS, P-Scale) but not in otherinstruments (ROPP, WHODAS II). The PARTS/M specifi-cally assesses the use of assistance and the frequencywhich accommodations, adaptations or special equip-ment is used. Asking about the use of equipment andassistance is important clinically since a person's environ-ment can often be modified to enhance their participa-tion. Further qualitative and quantitative studies willdetermine if respondents inherently consider their envi-ronment when answering the questions.Similar to environmental factors, there is variation inwhether a participation restriction is attributed to a healthcondition. In the WHODAS II and IPA the instructionsstate that the respondent should consider their healthcondition or disability. In the PARTS/M there are specificquestions which ask if the person's participation is limitedby their illness or physical impairment. Dubuc et al. [29]demonstrated the importance of specifying whether theparticipation restriction is a result of a health condition ornot, especially for areas which are highly influenced byenvironmental factors. By asking if the participationrestriction is a result of a health condition, it underesti-mated the influence of the environment since subjectsfocussed on the implications due their health and did notoften consider the restrictions in the physical and socialenvironment [29]. More research should determine thebest way to assess these influencing factors. The PARTS/Moffers the advantage of asking specific questions with andwithout the influence of health and the environmentwhich may help determine the causes of the participationrestrictions and also provide potentially 'pure measures'of participation. None of the instruments have meaning-ful concepts coded as personal factors, which is not sur-prising since this data is often collected separately (e.g.age, gender) in research studies. Further studies shouldcompare questions that either attribute or do not attributeparticipation to factors such as the environment or healthconditions to determine if these phrases influence a per-son's response.Study LimitationsThere are several limitations to this study which need tobe considered when interpreting the results. In this studyonly instruments which were developed using the ICFwere included and the meaningful concepts were linkedto the ICF classification, which limits the findings to howparticipation is conceptualized in the ICF. In addition, thecriteria assume it is desirable to have an instrument coverthe majority of areas within a multidimensional conceptsuch as participation and so it may not be suitable forinstruments which focus on selected areas such asPage 9 of 12(page number not for citation purposes)differentiated from participation [3]. It is interesting howenvironmental factors asking about assistance or equip-employment. By linking the meaningful concepts in thequestions to the ICF classification it provided an objectiveHealth and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93evaluation, however, it is possible that we did not capturethe correct meaning of the questions. Since very few stud-ies have linked the instruments used in this study to theICF classification, the results from this study should beconfirmed in other studies. Interpreting the questions anddetermining the meaningful concepts can be influencedby culture and the experience of the coders and enhance-ments to the ICF linking rules will help improve theassessment of content validity in these types of studies.ConclusionIn summary, this study linked eight instruments measur-ing participation to the ICF. The benefits of linking con-tent from instruments to the ICF have been described invarious studies [9,10,30]. These benefits include enablingusers to review the content as part of the selection process,providing a standardized approach to comparing the con-tent and informing future revisions of existing instru-ments. An enhancement to the linking methodology usedin this study enabled the role of contextual factors as wellas attribution of the participation restriction due to healthto be further examined within each question. Includingcontextual factors in the ICF is an important step forwardand empirical research comparing results from instru-ments which either include and or do not include contex-tual factors will further advance the measurement ofparticipation. The instruments all contain content fromthe domains d6 Domestic life to d9 Community, social andcivic life but there is variability in whether content fromdomains d1 Learning and applying knowledge, d3 Communi-cation and d5 Self-care is included. Two instruments, P-Scale and WHODAS II have questions which did not con-tain any ICF categories related to the domains in the activ-ities and participation component, which suggest thesequestions may not measure aspects of participation. Thedifferences in content, attributing participation restric-tions to health and asking about aspects of the environ-ment should be considered when selecting a participationinstrument as it may or may not be desirable dependingon the intended purpose.Competing interestsThe authors declare that they have no competing interests.Authors' contributionsVKN conceived the idea, conducted the literature review,was primarily involved with the data coding, analyzedand assisted in the interpretation of the results and wrotethe manuscript. JAK, LN conceived the idea, providedguidance on the data coding, assisted in the interpretationof the results and commented on the manuscript. ACassisted with the data coding and assisted in interpretingthe results. JS, LCM and MFD were involved in the inter-script. All authors read and approved the finalmanuscript.AppendixList of search termsConceptual model terms▪ International Classification of Functioning, Disabilityand Health (ICF)▪ International Classification of Impairment, Disabilityand Handicap (ICIDH)▪ ICIDH-2▪ World Health OrganizationParticipation related terms▪ participation▪ handicap▪ patient participation▪ consumer participation▪ community re-integration▪ community integration▪ social adaptation▪ social adjustment▪ independent living▪ daily life activity▪ instrumental activities of daily living▪ quality of lifeInstrument terms▪ questionnaire▪ instrument▪ instrument evaluation▪ health survey▪ health assessment questionnaire▪ psychometricsPage 10 of 12(page number not for citation purposes)pretation of the results and commented on the manu-Health and Quality of Life Outcomes 2009, 7:93 http://www.hqlo.com/content/7/1/93▪ disability evaluation▪ outcome assessment▪ rehabilitationAdditional materialAcknowledgementsThe authors would like to acknowledge John Cobb for his assistance with the data coding.References1. Reinhardt JD, Stucki G: Rheumatoid arthritis and participation--the social animal revisited.  J Rheumatol 2007, 34:1214-1216.2. Perenboom RJ, Chorus AM: Measuring participation accordingto the International Classification of Functioning, Disabilityand Health (ICF).  Disabil Rehabil 2003, 25:577-587.3. World Health Organization: International Classification of Functioning,Disability and Health Geneva: World Health Organization; 2001. 4. Noreau L, Fougeyrollas P, Post M, Asano M: Participation afterspinal cord injury: the evolution of conceptualization andmeasurement.  J Neurol Phys Ther 2005, 29:147-156.5. Whiteneck G: Conceptual models of disability: past, present,and future.  In Workshop on Disability in America: A New Look Editedby: Field MJ, Jette AM, Martin L. Washington, D.C.: National Acade-mies Press; 2006:50-66. 6. Pollard B, Johnston M, Dieppe P: What do osteoarthritis healthoutcome instruments measure? Impairment, activity limita-tion, or participation restriction?  J Rheumatol 2006, 33:757-763.7. Cieza A, Brockow T, Ewert T, Amman E, Kollerits B, Chatterji S,8. Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun B, Stucki G: ICFlinking rules: an update based on lessons learned.  J RehabilMed 2005, 37:212-218.9. Stucki A, Stucki G, Cieza A, Schuurmans MM, Kostanjsek N, Ruof J:Content comparison of health-related quality of life instru-ments for COPD.  Respir Med 2007, 101:1113-1122.10. Cieza A, Stucki G: Content comparison of health-related qual-ity of life (HRQOL) instruments based on the internationalclassification of functioning, disability and health (ICF).  QualLife Res 2005, 14:1225-1237.11. Badley EM: Enhancing the conceptual clarity of the activityand participation components of the International Classifica-tion of Functioning, Disability, and Health.  Soc Sci Med 2008,66:2335-2345.12. Jette AM, Haley SM, Kooyoomjian JT: Are the ICF Activity andParticipation dimensions distinct?  J Rehabil Med 2003,35:145-149.13. Nordenfelt L: Action theory, disability and ICF.  Disabil Rehabil2003, 25:1075-1079.14. Schuntermann MF: The implementation of the InternationalClassification of Functioning, Disability and Health in Ger-many: experiences and problems.  Int J Rehabil Res 2005,28:93-102.15. Cardol M, de Haan RJ, de Jong BA, van den Bos GA, de Groot IJ: Psy-chometric properties of the Impact on Participation andAutonomy Questionnaire.  Arch Phys Med Rehabil 2001,82:210-216.16. Sibley A, Kersten P, Ward CD, White B, Mehta R, George S: Meas-uring autonomy in disabled people: Validation of a new scalein a UK population.  Clin Rehabil 2006, 20:793-803.17. Wilkie R, Peat G, Thomas E, Hooper H, Croft PR: The KeeleAssessment of Participation: a new instrument to measureparticipation restriction in population studies. Combinedqualitative and quantitative examination of its psychometricproperties.  Qual Life Res 2005, 14:1889-1899.18. Ostir GV, Granger CV, Black T, Roberts P, Burgos L, Martinkewiz P,Ottenbacher KJ: Preliminary results for the PAR-PRO: a meas-ure of home and community participation.  Arch Phys Med Reha-bil 2006, 87:1043-1051.19. Gandek B, Sinclair SJ, Jette AM, Ware JE Jr: Development and Ini-tial Psychometric Evaluation of the Participation Measurefor Post-Acute Care (PM-PAC).  Am J Phys Med Rehabil.  2007,86(1):57-71.20. Brown M, Dijkers MP, Gordon WA, Ashman T, Charatz H, Cheng Z:Participation objective, participation subjective: a measureof participation combining outsider and insider perspectives.J Head Trauma Rehabil 2004, 19:459-481.21. Van Brakel WH, Anderson AM, Mutatkar RK, Bakirtzief Z, NichollsPG, Raju MS, Das-Pattanayak RK: The Participation Scale: Meas-uring a key concept in public health.  Disabil Rehabil 2006,28:193-203.22. Gray DB, Hollingsworth HH, Stark SL, Morgan KA: ParticipationSurvey/Mobility: psychometric properties of a measure ofparticipation for people with mobility impairments and lim-itations.  Arch Phys Med Rehabil 2006, 87:189-197.23. Pallant JF, Misajon R, Bennett E, Manderson L: Measuring theimpact and distress of health problems from the individual'sperspective: development of the Perceived Impact of Prob-lem Profile (PIPP).  Health Qual Life Outcomes 2006, 4:36.24. Sandström M, Lundin-Olsson L: Development and evaluation ofa new questionnaire for rating perceived participation.  ClinRehabil 2007, 21:833-845.25. World Health Organization Disability Assessment ScheduleII (WHODAS II)   [http://www.who.int/icidh/whodas]26. Haley SM, Gandek B, Siebens H, Black-Schaffer RM, Sinclair SJ, Tao W,Coster WJ, Ni P, Jette AM: Computerized adaptive testing forfollow-up after discharge from inpatient rehabilitation: II.Participation outcomes.  Arch Phys Med Rehabil 2008, 89:275-283.27. Xiong T, Hartley S: Challenges in linking health-status outcomemeasures and clinical assessment tools to the ICF.  Adv Physi-other 2008, 10:152-156.28. Fougeyrollas P, Beauregard L: An interactive person-environ-ment social creation.  In Handbook of Disability Studies Edited by:Albretch GL, Seelman KD, Bury M. Thousand Oaks: Sage Publications;Additional file 1ICF categories in the component activities and participation based on the meaningful concepts. The data include a detailed listing of the ICF categories from the activities and participation component coded based on the meaningful concepts.Click here for file[http://www.biomedcentral.com/content/supplementary/1477-7525-7-93-S1.doc]Additional file 2ICF categories in the components body functions and environmental factors based on the meaningful concepts. The data include a detailed listing of the ICF categories from the components body functions and envi-ronmental factors coded based on the meaningful concepts.Click here for file[http://www.biomedcentral.com/content/supplementary/1477-7525-7-93-S2.doc]Additional file 3Number of questions with ICF categories and codes (%). The data include the number of questions (and the percentage of the total number of ques-tions) that contain meaningful concepts linked to ICF categories within the ICF components as well as the codes for meaningful concepts which could not be linked. Click here for file[http://www.biomedcentral.com/content/supplementary/1477-7525-7-93-S3.doc]Page 11 of 12(page number not for citation purposes)Ustun TB, Stucki G: Linking health-status measurements to theinternational classification of functioning, disability andhealth.  J Rehabil Med 2002, 34:205-210.2001:171-194. 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 2009, 7:93 http://www.hqlo.com/content/7/1/9329. Dubuc N, Haley SM, Kooyoomjian JT, Jette AM: Assessing disabil-ity in older adults: the effects of asking questions with andwithout health attribution.  J Rehabil Med 2004, 36:226-231.30. Geyh S, Cieza A, Kollerits B, Grimby G, Stucki G: Content compar-ison of health-related quality of life measures used in strokebased on the international classification of functioning, disa-bility and health (ICF): a systematic review.  Qual Life Res 2007,16:833-851.yours — you keep the copyrightSubmit your manuscript here:http://www.biomedcentral.com/info/publishing_adv.aspBioMedcentralPage 12 of 12(page number not for citation purposes)


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