Restricted accessResearch articleFirst published online 2023-2
Measuring subjective aspects of participation in adults with disabilities: A systematic review of the coverage,content validity and internal structure of standardised instruments
To systematically review evidence on the coverage, content validity and internal structure of self-report measures capturing subjective aspects of participation for adults with disabilities.
Data sources
EMBASE, MEDLINE and reference lists were searched until July 10th, 2022 for articles on measurement properties of instruments measuring participation as defined in the International Classification of Functioning, Disability and Health, from a subjective perspective.
Method
Each instrument was assessed for its coverage of subjective aspects of participation. The Consensus-based Standards for the Selection of Health Measurement Instruments were used to assess the quality of each study. Content validity and internal structure (structural validity, internal consistency and cross-cultural validity) were rated against published standards and qualified by the adapted Grading of Recommendations Assessment, Development and Evaluation.
Results
Thirty-eight studies regarding 10 instruments were analysed. Most instruments mix activity and participation items. Only the Measure of Experiential Aspects of Participation (with high-quality evidence of sufficient structural validity and generally sufficient internal consistency), the Participation Enfranchisement and the Community Integration Measure showed adequate coverage. For all instruments, evidence of content validity is of low- to very low quality. There is high-quality evidence that the Participation Scale is not unidimensional.
Conclusion
In general, the coverage and the evidence for content validity and internal structure of measures capturing experiential aspects of participation are limited. The Measure of Experiential Aspects of Participation has the best level of evidence in support of its use. The score of the Participation Scale cannot be considered an adequate reflection of participation.
CardolMDe JongBAWardCD. On autonomy and participation in rehabilitation. Disabil Rehabil2002; 24: 970–974.
3.
World Health Organization. ICF: international classification of functioning, disability and health. Geneva: WHO, 2001.
4.
CoganAMCarlsonM. Deciphering participation: an interpretive synthesis of its meaning and application in rehabilitation. Disabil Rehabil2018; 40: 2692–2703.
5.
ChangFHCosterWJHelfrichCA. Community participation measures for people with disabilities: a systematic review of content from an international classification of functioning, disability and health perspective. Arch Phys Med Rehabil2013; 94: 771–781.
6.
EyssenICSteultjensMPDekkerJ,et al.A systematic review of instruments assessing participation: challenges in defining participation. Arch Phys Med Rehabil2011; 92: 983–997.
7.
NoonanVKKopecJANoreauL,et al.A review of participation instruments based on the International Classification of Functioning, Disability and Health. Disabil Rehabil2009; 31: 1883–1901.
8.
NoonanVKKopecJANoreauL, et al.Comparing the content of participation instruments using the International Classification of Functioning, Disability and Health. Health Qual Life Outcomes2009; 13: 93.
9.
HammelJMagasiSHeinemannA,et al.What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil2008; 30: 1445–1460.
10.
BrownMDijkersMPJMGordonWA,et al.Participation objective, participation subjective: a measure of participation combining outsider and insider perspectives. J Head Trauma Rehabil2004; 19: 459–481.
11.
WhiteneckGDijkersMP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. Arch Phys Med Rehabil2009; 90: s22–s35.
12.
Martin GinisKAEvansMBMortensonWB,et al.Broadening the conceptualization of participation of persons with physical disabilities: a configurative review and recommendations. Arch Phys Med Rehabil2017; 98: 395–402.
13.
PrinsenCACMokkinkLBBouterLM, et al.COSMIN Guideline for systematic reviews of patient-reported outcome measures. Qual Life Res2018; 27: 1147–1157.
14.
TerweeCBPrinsenCACChiarottoA, et al.COSMIN Methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study. Qual Life Res2018; 27: 1159–1170.
15.
TerweeCBBotSDMDe BoerMR, et al.Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol2007; 60: 34–42.
16.
MokkinkLBTerweeCBPatrickDL, et al.The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol2010; 63: 737–745.
17.
MokkinkLBDe VetHCWPrinsenCAC, et al.COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. Qual Life Res2018; 27: 1171–1179.
18.
PrinsenCACVohraSRoseMR, et al.How to select outcome measurement instruments for outcomes included in a “Core Outcome Set” – a practical guideline. Trials2016; 17: 1–10.
19.
LiberatiAAltmanDGTetzlaffJ, et al.The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Med2009; 6: e1000100.
20.
GrayDBHendershotGE. The ICIDH-2: developments for a new era of outcomes research. Arch Phys med Rehabil2000; 81: S10–S14.
21.
TerweeCBJansmaEPRiphagenII,et al.Development of a methodological PubMed search filter for finding studies on measurement properties of measurement instruments. Qual Life Res2009; 18: 1115–1123.
22.
McCollMADaviesDCarlsonP,et al.The community integration measure: development and preliminary validation. Arch Phys Med Rehabil2001; 82: 429–434.
23.
ReistetterTASpencerJCTrujilloL,et al.Examining the community integration measure (CIM): a replication study with life satisfaction. NeuroRehabil2005; 20: 139–148.
24.
LiuTWNgSSMNgGYF. Translation and initial validation of the Chinese (cantonese) version of community integration measure for use in patients with chronic stroke. Biomed Res Int2014; 2014: 623836.
25.
GriffenJAHanksRAMeachenSJ. The reliability and validity of the community integration measure in persons with traumatic brain injury. Rehabil Psychol2010; 55: 292–297.
26.
De WolfALane-BrownATateRL,et al.Measuring community integration after spinal cord injury: validation of the Sydney psychosocial reintegration scale and community integration measure. Qual Life Res2010; 19: 1185–1193.
27.
MillisSRMeachenSJGriffenJA,et al.Rasch analysis of the community integration measure in persons with traumatic brain injury. Arch Phys Med Rehabil2014; 95: 734–740.
28.
CardolMDe HaanRJVan Den BosGAM,et al.The development of a handicap assessment questionnaire: the Impact on Participation and Autonomy (IPA). Clin Rehabil1999; 13: 411–419.
29.
CardolMDe HaanRJDe JongBA,et al.Psychometric properties of the impact on participation and autonomy questionnaire. Arch Phys Med Rehabil2001; 82: 210–216.
30.
SibleyAKerstenPWardCD,et al.Measuring autonomy in disabled people: validation of a new scale in a UK population. Clin Rehabil2006; 20: 793–803.
31.
GhazianiEKroghAGLundH. Developing a Danish version of the “Impact on Participation and Autonomy Questionnaire”. Scand J Occup Ther2013; 20: 190–200.
32.
KerstenPCardolMGeorgeS,et al.Validity of the impact on participation and autonomy questionnaire: a comparison between two countries. Disabil Rehabil2007; 29: 1502–1509.
33.
LundMLFisherAGLexellJ,et al.Impact on participation and autonomy questionnaire: internal scale validity of the Swedish version for use in people with spinal cord injury. J Rehabil Med2007; 39: 156–162.
34.
NoonanVKKopecJANoreauL, et al.Comparing the validity of five participation instruments in persons with spinal conditions. J Rehabil Med2010; 42: 724–734.
35.
FallahpourMJonssonHJoghataeiMT,et al.Impact on participation and autonomy (IPA): psychometric evaluation of the Persian version to use for persons with stroke. Scand J Occup Ther2011; 18: 59–71.
36.
SuttiwongJVongsirinavaratMVachalathitiR,et al.Impact on participation and autonomy questionnaire: psychometric properties of the Thai version. J Phys Ther Sci2013; 25: 769–774.
37.
KarhulaMESalminenALHämäläinenPI,et al.Psychometric evaluation of the Finnish version of the impact on participation and autonomy questionnaire in persons with multiple sclerosis. Scand J Occup Ther2017; 24: 410–420.
38.
VazirinejadRLilleyJMWardCD. The ‘Impact on Participation and Autonomy’: acceptability of the English version in a multiple sclerosis outpatient setting. Multi Scler2003; 9: 612–615.
39.
NoonanVKopecJANoreauL,et al.Comparing the reliability of five participation instruments in persons with spinal conditions. J Rehabil Med2010; 42: 735–743.
40.
WilkieRPeatGThomasE,et al.The Keele Assessment of Participation: a new instrument to measure participation restriction in population studies. Combined qualitative and quantitative examination of its psychometric properties. Qual Life Res2005; 14: 1889–1899.
41.
HermsenLAHTerweeCBLeoneSS, et al.Social participation in older adults with joint pain and comorbidity; testing the measurement properties of the Dutch Keele Assessment of Participation. BMJ Open2013; 3: 1–10.
42.
CaronJGMartin GinisKARocchiM,et al.Development of the measure of experiential aspects of participation for people with physical disabilities. Arch Phys Med Rehabil2019; 100: 67–77.e2.
43.
GrayDBHollingsworthHHStarkSL,et al.Participation survey/mobility: psychometric properties of a measure of participation for people with mobility impairments and limitations. Arch Phys Med Rehabil2006; 87: 189–197.
44.
HeinemannAWMagasiSBodeRK, et al.Measuring enfranchisement: importance of and control over participation by people with disabilities. Arch Phys Med Rehabil2013; 94: 2157–2165.
45.
Van BrakelWHAndersonAMMutatkarRK, et al.The Participation Scale: measuring a key concept in public health. Disabil Rehabil2006; 28: 193–203.
46.
StevelinkSAMHoekstraTNardiSMT, et al.Development and structural validation of a shortened version of the Participation Scale. Disabil Rehabil2012; 34: 1596–1607.
47.
StevelinkSAMTerweeCBBanstolaN,et al.Testing the psychometric properties of the Participation Scale in eastern Nepal. Qual Life Res2013; 22: 137–144.
48.
IbikunlePOOladipoSEChukwuJN,et al.Establishing the psychometric properties of the IGBO version of the participation scale. Lepr Rev2016; 87: 396–404.
49.
SouzaMAPCosterWJManciniMC,et al.Rasch analysis of the participation scale (P-scale): usefulness of the P-scale to a rehabilitation services network. BMC Public Health2017; 17: 934.
50.
ChungEYLamG. Validation of two scales for measuring participation and perceived stigma in Chinese community-based rehabilitation programs. Health Qual Life Outcomes2018; 16: 1–12.
51.
de ZeeuwJDouwstraMOmansenTF, et al.Psychometric properties of the Participation Scale among former Buruli ulcer patients in Ghana and Benin. PLoS Negl Trop Dis2014; 8: e3254.
52.
ThammaiahSManchaiahVEaswarV,et al.The Participation Scale: psychometric properties of a South Indian translation with hearing-impaired respondents. Disabil Rehabil2018; 40: 2650–2657.
53.
RensenCBandyopadhyaySGopalPK,et al.Measuring leprosy-related stigma – a pilot study to validate a toolkit of instruments. Disabil Rehabil2011; 33: 711–719.
54.
SandströmMLundin-OlssonL. Development and evaluation of a new questionnaire for rating perceived participation. Clin Rehabil2007; 21: 833–845.
55.
PostMWMVan Der ZeeCHHenninkJ,et al.Validity of the Utrecht scale for evaluation of rehabilitation – participation. Disabil Rehabil2012; 34: 478–485.
56.
MaderLPostMWMBallertCS,et al.Metric properties of the Utrecht scale for evaluation of rehabilitation-participation (user-participation) in persons with spinal cord injury living in Switzerland. J Rehabil Med2016; 48: 165–174.
57.
LeeJHParkJHKimYJ,et al.Validity and reliability of the Korean version of the Utrecht scale for evaluation of rehabilitation – participation. Occup Ther Int2017; 23: 9452051.
58.
Van Der ZeeCHPostMWBrinkhofMW,et al.Comparison of the Utrecht scale for evaluation of rehabilitation – participation with the ICF measure of participation and activities screener and the WHO disability assessment schedule ii in persons with spinal cord injury. Arch Phys Med Rehabil2014; 95: 87–93.
59.
Martin GinisKAMaJKLatimer-CheungAE,et al.A systematic review of review articles addressing factors related to physical activity participation among children and adults with physical disabilities. Health Psychol Rev2016; 10: 478–494.
60.
DijkersMP. Issues in the conceptualization and measurement of participation: an overview. Arch Phys Med Rehabil2010; 91: S5–S16.
61.
ChangFHCosterWJ. Conceptualizing the construct of participation in adults with disabilities. Arch Phys Med Rehabil2014; 95: 1791–1798.
62.
MagasiSHammelJHeinemannA,et al.Participation: a comparative analysis of multiple rehabilitation stakeholders’ perspectives. J Rehabil Med2009; 41: 936–944.
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