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Maintaining participation and social function is important to individuals with musculoskeletal conditions (1). Although there is no single clearly specified or widely agreed concept of participation, it is generally understood to be the domain of functioning beyond impairments and the performance of basic tasks (e.g., sit to stand) and refers to the context in which people live (2). The publication of the World Health Organization's International Classification of Functioning in 2001 has done much to raise awareness of the need to measure social function and participation, and their definition can be used as a starting point; participation, the concept proposed to capture social function, refers to the experience in life situations where an individual interacts with their environment (e.g., physical environment and other people) (3). Participation has evolved from a number of concepts, including handicap, instrumental activities of daily living, and social role participation, and is a broad term that covers an individual's experience in an infinite number of life activities and social roles, for example, work, looking after others, leisure activities, volunteering, and being involved in the community.

Participation and social function have not been measured routinely in musculoskeletal populations in clinical practice or research studies (4). Measurement of the consequences and management of musculoskeletal conditions have tended to focus on impairments (e.g., pain) and physical limitations (e.g., walking limitation). However, in recognition of the need to measure the full impact and wider influence of these conditions, there have been moves towards measuring the personal and social impact, captured by participation and social functioning (5–8). There is a growing interest in participation because the social consequences of musculoskeletal conditions (such as difficulty going shopping or visiting relatives) may be of more concern to patients than impairments (such as pain) or specific activity limitations (such as walking more than half a mile) (9). Participation is an important outcome measure for intervention studies and as a measure of success of health care and prevention programs, even if it is not the main target. For example, joint replacement or interventions to reduce pain may also enhance abilities to work or socialize with friends. Importantly, as many musculoskeletal conditions are long lasting, it is possible that even in the presence of ongoing signs (radiographic change), symptoms (pain), and activity limitation (walking limitation), participation can be maintained (5).

The purpose of this review was to assist the selection of an instrument to measure participation and social function in clinical practice or research studies in adult populations with musculoskeletal conditions. Following a comprehensive search of the published literature (the method is available from the authors), 6 instruments were identified that 1) had been developed to exclusively measure participation or social function in clinical practice or research, 2) were freely accessible and did not require purchase, and 3) have published evidence of sufficient psychometric testing to assess their applicability in (musculoskeletal) clinical practice or research. These instruments were the Impact on Participation and Autonomy (IPA) (10), Keele Assessment of Participation (KAP) (11), Participation Measure for Post-Acute Care (PM-PAC) (12), Participation Objective, Participation Subjective (POPS) (13), Rating of Perceived Participation (ROPP) (14), and The Participation Scale (15). All 6 have been developed as generic measures of participation. Four of the instruments (IPA, KAP, POPS, and ROPP) were developed to be administered as self-complete questionnaires. The Participation Scale and PM-PAC were designed to be administered as an interview and POPS can also be administered as an interview.

Each instrument is designed to measure participation in a different way; IPA measures choice and control (i.e., the possibility to do the things the way you want), KAP measures performance “as and when you want,” PM-PAC measures limitation, POPS measures objective (i.e., frequency) and subjective (i.e., satisfaction) participation, ROPP measures the individual's perceived and desire to change participation, and The Participation Scale measures participation compared to a “peer norm.” All of the instruments measure participation in mobility, self-care, domestic life, interpersonal interaction, and relationships, major life (e.g., work, education), and community and social life, except POPS, which does not measure aspects of self-care. The instruments contain a varying number of items (range 11–78 items); this is linked to the detail of participation measured (e.g., KAP contains the fewest items and measures participation broadly at domain level, POPS and ROPP contain the greatest number of items, and provide greater detail by measuring participation in specific life situations).

The evidence of psychometric properties is outlined in the Summary Table. The quality of psychometric testing varied across instruments. Tests have followed criteria and were linked to the intended measurement constructs. However, for 4 of the 6 instruments (KAP, POPPS, The Participation Scale, and ROPP) there is only 1 published paper that explored psychometric properties and most psychometric studies have been undertaken with small numbers. Tests for most instruments have focused on face and construct validity and reliability. Only IPA and PM-PAC have been tested specifically in musculoskeletal populations while the KAP has only been tested in the general population.

Table  . Summary Table for Measures of Social Function and Participation*
ScalePurpose/contentMethod of administrationRespondent burdenAdministrative burdenScore interpretationReliability evidenceValidity evidenceAbility to detect changeStrengthsCautions
  • *

    IPA = Impact on Participation and Autonomy; ICCs = intraclass correlation coefficients; SF-36 = Short Form 36; SRM = standardized response mean; AUC = area under the curve; KAP = Keele Assessment of Participation; PM-PAC = Participation Measure for Post-Acute Care; CAT = computer-assisted testing; POPS = Participation Objective, Participation Subjective; PO = objective participation; PS = subjective participation; BISQ = Brain Injury Screening Questionnaire; BDI II = Beck Depression Inventory II; Flanagan QOLS = Flanagan Quality of Life Scale; ROPP = Rating of Perceived Participation.

IPA23 items; measures choice and control of participationSelf-complete questionnaire30 minutesMinimalHigher score = greater perceived participation restrictionKappa for individual items 0.56–0.90; ICCs for domains 0.83–0.91Comprehensive measure of participation; high levels of face validity; construct validity: associations with London Handicap Scale, and relevant components of the SF-36 and Sickness Impact ProfileScales responsive to change: family role, (SRM 0.8, AUC 0.8), autonomy outdoors (SRM 1.2, AUC 0.9), work and education (SRM 1.3, AUC 0.9); scales less able to detect change: autonomy indoors (SRM 0.4, AUC 0.6), social relations (SRM 0.1, AUC 0.5)Acceptable levels of validity and applicable in any populationFurther testing required for construct validity and responsiveness
KAP11 items; measures person-perceived performance in participation tasksSelf-complete questionnaire3 minutes; 98.2% completion rateMinimalRange 0–11, higher score = more restrictionsMean observed agreement over a 4-week period for dichotomized responses was 90%; kappa for individual items 0.20–0.71Comprehensive measure of participation; high levels of face validity; construct validity: associations with IPA and Re-integration to Normal Living IndexNot testedBrief, concise, and comprehensive; applicable in general adult populationsFurther testing required for responsiveness; information required on managing missing data
PM-PAC51 items; measures limitation in and satisfaction with participationInterviewNot clearly reportedNot reportedHigher score = greater participation and satisfactionICC range 0.61–0.86; mean difference scores ranged from–2.09 to 2.11 across 7 scalesConstruct validity: scores differed significantly with diagnostic groups (P < 0.001) on all scales except domestic life. (i.e., lower mean scores with greater severity of condition)Not tested; other versions (PM-PAC-CAT) have demonstrated an ability to detect changeMay be useful for clinical practice, but other adaptations not freely available (PM-PAC-CAT), show promise for CAT, monitoring change and testing interventionsScoring is unclear; further testing is required for construct validity and responsiveness
POPS78 items; measures objective and subjective participation in 26 activitiesSelf-complete or interviewNo informationMinimalRange for subjective participation −4 to 4; range for objective participation −3 to 3; higher scores = greater participationTest–retest reliability ICCPO = 0.75, ICCPS = 0.80Construct validity: association with BISQ, BDI II, Flanagan QOLS, Life 3; discordance between participation objective and participation subjectiveNot testedCaptures objective and subjective participation; could be useful in clinical practice as allows patients to indicate areas of participation that they would like clinicians to targetFurther testing required in musculoskeletal populations and for responsiveness; information required on managing missing data
ROPP66 items; measures perceived level, satisfaction, and need for support to change the level of participation in 22 activitiesSelf-complete questionnaire15–30 minutesMinimalRange 0–88; higher score = greater participation restrictionInternal consistency: Cronbach's α 0.50–0.89; mean ± SD difference between test–retest scores was 1.13 ± SD 3.93Construct validity: associations with satisfaction and desired supportNot testedPotentially useful in clinical practice as allows respondents to indicate the requirement of interventions to improve their participationFurther testing required for construct validity and responsiveness
The Participation Scale18 items; compare an individual's participation to a peer normInterview20 minutes to complete; item difficulty not reported20 minutes to administerRange 1–5; higher score = greater restriction; arbitrary severity categories providedHigh level of internal consistency and reliabilityComprehensive measure of participation; reasonable level of construct validityFound to be responsiveMeasures participation comprehensively; more analysis neededFurther testing required; no specific recall period

IPA, PM-PAC, POPS, and ROPP have been designed for use in clinical practice. All 4 instruments can indicate areas where restriction occurs and in addition the ROPP and POPS allow recipients to indicate areas of participation that they would like clinicians to focus on and aim to improve. KAP and The Participation Scale have not been tested for use in clinical practice as yet. IPA, KAP, and The Participation scale have been tested and applied in observational research studies (e.g., 5,15,16) but POPS, PM-PAC, and ROPP require further testing for such use. There is potential for IPA and The Participation Scale to be used in trials although further testing is required to assess their suitability to detect change (responsiveness).

IMPACT ON PARTICIPATION AND AUTONOMY (IPA)

  1. Top of page
  2. IMPACT ON PARTICIPATION AND AUTONOMY (IPA)
  3. KEELE ASSESSMENT OF PARTICIPATION (KAP)
  4. PARTICIPATION MEASURE FOR POST-ACUTE CARE (PM-PAC)
  5. PARTICIPATION OBJECTIVE, PARTICIPATION SUBJECTIVE (POPS)
  6. RATING OF PERCEIVED PARTICIPATION (ROPP)
  7. THE PARTICIPATION SCALE
  8. DISCUSSION
  9. AUTHOR CONTRIBUTIONS
  10. REFERENCES

Description

Purpose.

The IPA was developed as a generic scale to measure person-perceived participation and autonomy, and for use in a wide range of populations (17). The original instrument was organized into 4 dimensions (social relationships, autonomy in self-care, mobility and leisure, and family role) and consists of 23 items. Updated versions have 5 domains (autonomy indoors, family role, autonomy outdoors, social relations, and work and educational opportunities), and 31 items plus 8 additional items to address problem experiences (10, 18). English versions have 8 domains (31 items plus 8 items to address problem experiences) (19), and 5 domains (31 items plus 8 items to address problem experiences, plus 1 extra item [helping others]) (20).

Content.

The items capture autonomy and participation. In the original instrument, following principal component analysis (PCA) and item reduction, 4 domains (23 items) are measured: social relations, autonomy in self-care, mobility and leisure, family role. Further development, again using PCA led to the 5 domains: autonomy indoors, family role, autonomy outdoors, social relations, work and education (10).

Number of items.

5 subscales; 31 items plus 8 problem experience items (10).

Response options/scale.

5-point Likert scale (excellent, very good, moderate, poor, very poor) (17). Later revised to very good, good, fair, poor, very poor (10). A 3-point Likert scale is used for problem experience (no, minor, severe).

Recall period for items.

Current.

Endorsements.

None.

Examples of use.

Lund ML, Lexell J. Associations between perceptions of environmental barriers and participation in persons with late effects of polio. Scand J Occup Ther 2009;16:194–204.

Slim FJ, van Schie CH, Keukenkamp R, Faber WR, Nollet F. Effects of impairments on activities and participation in people affected by leprosy in The Netherlands. J Rehabil Med 2010;42:536–43.

Lund ML, Lexell J. Relationship between participation in life situations and life satisfaction in persons with late effects of polio. Disabil Rehabil 2009;31:1592–7.

Videler AJ, Beelen A, van Schaik IN, de Visser M, Nollet F. Limited upper limb functioning has impact on restrictions in participation and autonomy of patients with hereditary motor and sensory neuropathy. J Rehabil Med 2009;41:746–50.

Lund ML, Lexell J. Perceived participation in life situations in persons with late effects of polio. J Rehabil Med 2008;40:659–64.

Nieuwenhuijsen C, van der Laar Y, Donkervoort M, Nieuwstraten W, Roebroeck ME, Stam HJ. Unmet needs and health care utilization in young adults with cerebral palsy. Disabil Rehabil 2008;30:1254–62.

Bastiaenen CH, de Bie RA, Vlaeyen JW, Goossens ME, Leffers P, Wolters PM, et al. Long-term effectiveness and costs of a brief self-management intervention in women with pregnancy-related low back pain after delivery. BMC Pregnancy Childbirth 2008;8:19.

Verbunt JA, Seelen HA, Ramos FP, Michielsen BH, Wetzelaer WL, Moennekens M. Mental practice-based rehabilitation training to improve arm function and daily activity performance in stroke patients: a randomized clinical trial. BMC Neurology 2008;8:7.

Van de Port IG, van den Bos GA, Voorendt M, Kwakkel G, Lindeman E. Identification of risk factors related to perceived unmet demands in patients with chronic stroke. Disabil Rehabil 2007;29:1841–6.

Kos D, Duportail M, D'hooghe M, Nagels G, Kerckhofs E. Multidisciplinary fatigue management programme in multiple sclerosis: a randomized clinical trial. Mult Scler 2007;13:996–1003.

Lemmens J, I S M van Engelen E, Post MW, Beurskens AJ, Wolters PM, de Witte LP. Reproducibility and validity of the Dutch Life Habits Questionnaire (LIFE-H 3.0) in older adults. Clin Rehabil 2007;21:853–62.

Lund M, Nordlund A, Bernsping B, Lexell J. Perceived participation and problems in participation are determinants of life satisfaction in people with spinal cord injury. Disabil Rehabil 2007;29:1417–22.

Middelkamp W, Moulaert VR, Verbunt JA, van Heugten CM, Bakx WG, Wade DT. Life after survival: long-term daily life functioning and quality of life of patients with hypoxic brain injury as a result of a cardiac arrest. Clin Rehabil 2007;21:425–31.

Practical Application

How to obtain.

Questionnaire is included in the appendix of original articles (10, 17).

Method of administration.

Self-administered questionnaire.

Scoring.

Each item is scored from 1–5; item scores are summated within domains. It is unclear if these subscales include the problem experience items or if these are analyzed separately.

Score interpretation.

Increasing scores indicate greater perceived participation. Score range varies depending on the number of items. No normative values available and no interpretation or cut points are given.

Respondent burden.

Mean ± SD time to complete (for original 41 items) is 30 ± 15 minutes (17). Mean time to complete (for 39 items) is 19.3 minutes (19).

Administrative burden.

No information on administrative burden. Training is not needed.

Translations/adaptations.

Original is in Dutch (10, 18), and there are translations into English (19) and (20). Rasch analysis shows that the IPA subscales and a 30-item IPA (minus 1 item) were invariant across Dutch and English cultures (20). Adaptations: generic questionnaire, no changes for musculoskeletal populations.

Psychometric Information

Method of development.

Items were generated by experts (multidisciplinary group) based on International Classification of Impairment, Disability, and Handicap, and discussed with patients (small qualitative pilot study). Items were deleted if not considered relevant for at least 75% of patients, or if ambiguous (procedures only briefly described).

Acceptability.

Low response rates, especially in patients with rheumatoid arthritis and fibromyalgia (42% and 37%, respectively) (10). Missing values ranged from 0–3% (17). The results of an interview study to assess acceptability were as follows: easy to complete (83%), no items embarrassing, a few items could be removed or added according to participants (19). No information is available on floor or ceiling effects.

Reliability.

Internal consistency for the original version (17) by Cronbach's α = 0.86 (social relations), 0.87 (self-care); 0.84 (family role), 0.85 (mobility and leisure); for the revised version (10) Cronbach's α = 0.86 (social relations), 0.91 (autonomy indoors), 0.90 (family role), 0.81 (autonomy outdoors), 0.91 (work and education) (10). Test–retest reliability: weighted kappas for individual items: 0.56–0.90. Intraclass correlation coefficient range for domains is 0.83–0.91.

Validity.
Face and content validity.

IPA provides comprehensive coverage of participation domains, and nearly all subdomains (except some aspects of communication and religion). Results of the interview study (19) showed IPA was accurate for patient's situation (63%), design was good (74.3%), and it was relevant (74–97.1%) (19).

Structural validity.

Factor structure determined by PCA (10, 17).

Construct validity.

Hypotheses tested to assess convergent (correlations 0.29—0.59) and discriminant validity (correlations 0.01–0.50) using London Handicap Scale, Short Form 36, and Sickness Impact Profile. Associations have not been presented for social functioning subscale of the Short Form 36 (10).

Ability to detect change.

Anchor-based method. Before-after treatment and several transition indices (18). Standardized response means (SRMs) and area under the curve (AUC) indicate responsiveness to change of 3 dimensions; family role (SRM 0.8, AUC 0.8), autonomy outdoors (SRM 1.2, AUC 0.89), work and education (SRM 1.3, AUC 0.93). Results acceptable for autonomy indoors (SRM 0.4, AUC 0.62) and for social relations (SRM 0.1, AUC 0.5).

Quality of psychometric testing.

The design of the questionnaire is acceptable, although there was limited input from patients in design. It is unclear how and by whom items were generated. Procedures for reducing items are briefly described, and there is no justification for choice of response options. Internal consistency is good (2 studies). Reliability is good (1 study). There is no information on measurement error. In terms of face and content validity, comprehensive measurement of participation and interview study shows IPA is relevant and acceptable (1 study). In terms of construct validity, structural validity is demonstrated by PCA (2 studies), but no confirmatory factor analysis has been conducted.

For the hypothesis testing, the correlations (convergent/discriminant) not all convincing (1 study). In cross-cultural validity, 1 study confirms the relevance and acceptability in English; 1 study using item-response theory shows that 30 of the items were invariant across English and The Netherlands populations. In terms of responsiveness, it demonstrated acceptable properties to allow measurement of responsiveness for 3 of 5 domains (1 study), unacceptable for 2 domains. It is unclear if this is caused by lack of change in population. There is no information on minimum important change (MIC) and on interpretability. Overall, the quality of psychometric testing has been good, but more evidence in musculoskeletal populations needed on construct validity, measurement error, responsiveness, MIC, and interpretability.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

The instrument has good face validity and provides comprehensive measurement of participation. It has been tested in patients with a wide range of conditions, in particular neuromuscular disease, spinal cord injuries, traumatic head injuries, multiple sclerosis, stroke, fibromyalgia, and rheumatoid arthritis. Relevant according to patients.

Caveats and cautions.

Further psychometric testing is required particularly with respect to construct validity and responsiveness. Study populations have not been very large. Low response rate in 1 study. No evidence on MIC and interpretability.

Clinical usability.

Administrative burden is small. Responder burden is small, although response rate was low in one study, and time to complete is quite long (20–30 minutes). Acceptable and relevant to patients (1 study). Unable to interpret scores at present.

Research usability.

Interpretability as yet unclear. Cross-cultural validity established for The Netherlands and UK, not yet available or tested in other languages. Face validity, consistency, and reliability are good, supporting research use, but more evidence needed in other populations and settings to support construct validity, measurement error, responsiveness, MIC, and interpretability. Time to complete may limit usefulness in research projects measuring a wide range of concepts.

KEELE ASSESSMENT OF PARTICIPATION (KAP)

  1. Top of page
  2. IMPACT ON PARTICIPATION AND AUTONOMY (IPA)
  3. KEELE ASSESSMENT OF PARTICIPATION (KAP)
  4. PARTICIPATION MEASURE FOR POST-ACUTE CARE (PM-PAC)
  5. PARTICIPATION OBJECTIVE, PARTICIPATION SUBJECTIVE (POPS)
  6. RATING OF PERCEIVED PARTICIPATION (ROPP)
  7. THE PARTICIPATION SCALE
  8. DISCUSSION
  9. AUTHOR CONTRIBUTIONS
  10. REFERENCES

Description

Purpose.

KAP was developed as a generic measure of person-perceived performance of participation “as and when you want.” It is intended for use in adults in the general population. Published in 2005 by Wilkie et al (11), there are currently no updates or revisions.

Content.

Items measure participation in the domains of mobility, self-care, domestic life, interpersonal interaction, major life, community, and social life.

Number of items.

11 items (15 including the screening questions).

Response options/scale.

Each item has a 5-point adjective ordinal scale (all of the time, most of the time, some of the time, a little of the time, none of the time).

Recall period for items.

4 weeks.

Endorsements.

None.

Examples of use.

Wilkie R, Peat G, Thomas E, Croft PR. The prevalence of person-perceived participation restriction in community-dwelling older adults. Qual Life Res 2006;15:1471–9.

Wilkie R, Peat G, Thomas E, Croft PR. Factors associated with participation restriction in community-dwelling adults aged 50 years and over. Qual Life Res 2007;16:1147–56.

Wilkie R, Peat G, Thomas E, Croft PR. Factors associated with restricted mobility outside the home in community-dwelling adults aged 50 years and over with knee pain: an example of use of the International Classification of Functioning to investigate participation restriction. Arthritis Rheum 2007;57:1381–9.

Wilkie R, Thomas E, Mottram S, Peat G, Croft P. Onset and persistence of person-perceived participation restriction in older adults: a 3-year follow-up study in the general population. Health Qual Life Outcomes 2008;6:92.

Practical Application

How to obtain.

The instrument is part of the original article (11).

Method of administration.

Self-administered questionnaire.

Scoring.

Each item is dichotomized to define the presence (some, a little, none of the time) or absence (all or most of the time) of participation restriction. Total scores are calculated by summing the number of items where restriction occurs (0–11 items). A computer is unnecessary. There are no instructions for managing missing data.

Score interpretation.

Scores range from 0–11 (where 0 = no restriction and 1 to 11 = any restriction). No restriction is reported by 53% of the general population.

Respondent burden.

Completion takes 3 minutes. It is easy to complete, and there is a 98.2% completion rate.

Administrative burden.

Not reported.

Translations/adaptations.

At present, only in English. Data have been reported for knee pain populations.

Psychometric Information

Method of development.

Items were generated by the authors for the International Classification of Functioning participation domains 4 to 9. No patients were involved in item selection, but assisted with formatting. There are no subscales of participation. Item-response theory has not been used.

Acceptability.

It is easy to complete and understand the questions; there was a 98.2% completion rate. No information on missing data; 53% of responses had no restriction-ceiling effect.

Reliability.

Internal consistency was not examined. For test–retest, the mean observed agreement over a 4-week period for dichotomized responses was 90%. Kappa values ranged from 0.20–0.71. Interrater reliability was not relevant. Minimal detectable change and SEM were not reported.

Validity.

Cognitive and semistructured interviews found that the instrument comprehensively measured participation. KAP demonstrated high levels of agreement with the Reintegration to Normal Living index and Impact of Participation and Autonomy.

Ability to detect change.

Responsiveness and minimum clinically important difference (MCID) have not been tested.

Quality of psychometric testing.

The development of the questionnaire is acceptable. Patients were used to adapt items. Internal consistency was not tested. Tests of reliability lack detail. There is no information on measurement error. Face and content validity: interview studies with musculoskeletal patients demonstrated high levels of acceptance and that participation was comprehensively measured. For construct validity and hypotheses testing, hypotheses were prespecified but not overly specific. The levels of agreement assessed with relevant tools (Re-integration to Normal Living and the Impact on Participation and Autonomy). Responsiveness was not tested. There is no information on minimum important change, and more information is required on interpretability. Overall, there is a reasonable level of testing to allow measurement of participation at a single time point. More evidence is required on responsiveness.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

The instrument measures participation comprehensively and can be applied to the general population (generic measure; i.e., all musculoskeletal groups). It is brief and concise, with minimal responder burden. It has not been tested sufficiently to evaluate its appropriateness for evaluating interventions.

Caveats and cautions.

Further psychometric testing is required for responsiveness, MCID and information required for how to deal with missing items.

Clinical usability.

Although the instrument has been used in the general population, further testing in clinical populations is required. Responder burden is minimal. No assessment of administrative burden.

Research usability.

Face and construct validity tests support use for cross-sectional research. There is no assessment of administrative burden, and the responder burden will not limit use.

PARTICIPATION MEASURE FOR POST-ACUTE CARE (PM-PAC)

  1. Top of page
  2. IMPACT ON PARTICIPATION AND AUTONOMY (IPA)
  3. KEELE ASSESSMENT OF PARTICIPATION (KAP)
  4. PARTICIPATION MEASURE FOR POST-ACUTE CARE (PM-PAC)
  5. PARTICIPATION OBJECTIVE, PARTICIPATION SUBJECTIVE (POPS)
  6. RATING OF PERCEIVED PARTICIPATION (ROPP)
  7. THE PARTICIPATION SCALE
  8. DISCUSSION
  9. AUTHOR CONTRIBUTIONS
  10. REFERENCES

Description

Purpose.

PM-PAC was developed to measure participation outcomes of rehabilitation services provided in outpatient or home-care settings. It is a measure for community-based individuals, and was originally published by Gandek et al in 2007 (12).

Content.

PM-PAC evaluates participation in 9 domains: mobility, role functioning, community, social, and civic life, domestic life/self-care, economic life, interpersonal relationships, communication, work, and education.

Number of items.

51 items.

Response options/scale.

The PM-PAC contains 11 different response options: 1) Are you limited? (not at all/a little/some/quite a lot/completely); 2) How much are you limited? (not at all limited/a little/somewhat/very much/extremely limited/do not do this); 3) How much of the time? (all the time/most of the time/some of the time/a little of the time/none of the time); 4. How many days? (everyday/5–6 days/3–4 days/1–2 days/never); 5) Employment status? (working full-time/working part-time/unemployed but looking for work/unemployed and not looking for work/a homemaker/doing full- or part-time volunteer service/full-time student/employment trainee/vocational rehabilitation/retired/temporarily unable to work because of health or disability/completely unable to work due to health or disability); 6) Education? (yes/no but I would like to/no and I don't want to); 7) Describe social life (I do not have any difficulty doing things socially/I maintain my usual pattern of social activities/I am somewhat restricted in the amount and type of social activities I do/I am restricted in the amount and type of social activities I do/I do not see family and friends/I only see those who come to care for me); 8) How many times have you done things socially? (none/once/twice/3 times/more than 3 times); 9) Satisfaction (very satisfied/somewhat satisfied/neither satisfied nor dissatisfied/somewhat dissatisfied/very dissatisfied); 10) Number of close friends (0, 1, 2 to 4, 5 to 8, or 9+); 11) Drain on financial resources? (not at all/a little/somewhat/quite a lot/extremely).

Recall period for items.

Past week or current status.

Endorsements.

None.

Examples of use.

Jette AM, Keysor J, Coster W, Ni P, Haley S. Beyond function: predicting participation in a rehabilitation cohort. Arch Physical Med Rehabil 2005;86:2087–94.

Keysor JJ, Jette AM, Coster W, Bettger JP, Haley SM. Association of environmental factors with levels of home and community participation in an adult rehabilitation cohort. Arch Physical Med Rehabil 2006;87:1566–75.

How to obtain.

In appendix of reference12.

Method of administration.

Intended for self-report but was administered by interview during testing.

Scoring.

Scoring instructions not given.

Score interpretation.

Higher scores indicate greater participation and satisfaction. No normative values given.

Respondent burden.

Assessed but results not reported.

Administrative burden.

Not reported.

Translations/adaptations.

Original in English, there is a French translation although not tested. PM-PAC has been further developed for administration using computer assisted testing (PM-PAC-CAT).

Psychometric Information

Method of development.

A literature search of existing tools was used to identify possible items, along with generation of items from a group of experts. The items in the PM-PAC were discussed with 4 focus groups of rehabilitation patients and were pilot tested in interviews with 8 individuals with disability. Feedback on items was obtained from 8 professionals in the rehabilitation field and items were modified accordingly. Subscales were generated to link with the International Classification of Functioning domains; however, initial psychometric analysis led to the allocation of some items to other domains. Potential items were selected by a group of experts. Item-response theory led to the allocation of some items to other domains.

Acceptability.

Readability was not reported. Missing data do not appear to be common, although exact levels are not reported.

Reliability.

For internal consistency, Cronbach's alpha for all scales ranged from 0.72–0.89. For test–retest reliability, the intraclass correlation coefficient range was 0.61–0.86. Mean difference scores ranged from −2.09 to 2.11 across the 7 scales (test–retest scores were not significantly different on average across the scales). Minimal detectable change and SEM were not tested.

Validity.

Face validity was not tested. Confirmatory factor analysis indicated that there were 7 participation domains (work and education were not included). In terms of construct validity, scores differed significantly with diagnostic groups (P < 0.001) on all scales except domestic life. Mean scale scores generally reflected hypothesized patterns; those with more severe problems for mobility, role functioning, and community and social life. Number of days that respondents left their home was significantly related to mobility, role functioning, community, social and civic life, and domestic life but was not significantly related to the other scales.

Ability to detect change.

Responsiveness and minimum clinically important difference were not tested.

Quality of psychometric testing.

The development of PM-PAC is acceptable. There is a poor description of scoring, and no information on missing data or how to handle missing data. Internal consistency was adequately tested and is an acceptable level. Reliability was adequately tested and is an acceptable level. Face validity was not assessed.

Construct was examined with reference to impairment status. Further testing is required. Responsiveness was not assessed, and there is no information on minimum important change and interpretability. Overall, there is high quality of testing of internal consistency and reliability, but no other testing of other properties. Some of the remaining properties of the measure not tested here are dealt with in the development of PM-PAC-CAT, which is not freely obtainable.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

May be useful for clinical practice. Other adaptations, which are not freely available, show promise for computer-assisted testing, monitoring change, and testing interventions.

Caveats and cautions.

Further testing is required to indicate levels of responder and administrative burden. Unsure how to score. Further psychometric testing is required particularly with relation to responsiveness and repeatability.

Clinical usability.

Unable to interpret scores at present. Further assessment of administrative and responder burden would be useful.

Research usability.

Unclear how to score the instrument. Could be used to measure participation in the 9 domains. More testing on responsiveness would be useful.

PARTICIPATION OBJECTIVE, PARTICIPATION SUBJECTIVE (POPS)

  1. Top of page
  2. IMPACT ON PARTICIPATION AND AUTONOMY (IPA)
  3. KEELE ASSESSMENT OF PARTICIPATION (KAP)
  4. PARTICIPATION MEASURE FOR POST-ACUTE CARE (PM-PAC)
  5. PARTICIPATION OBJECTIVE, PARTICIPATION SUBJECTIVE (POPS)
  6. RATING OF PERCEIVED PARTICIPATION (ROPP)
  7. THE PARTICIPATION SCALE
  8. DISCUSSION
  9. AUTHOR CONTRIBUTIONS
  10. REFERENCES

Description

Purpose.

POPS was developed to measure participation (as defined by the International Classification of Functioning framework) and extend previous measures of community integration. It is a generic tool developed for any population. It was published in 2004 by Brown et al (13) and there are no known updates or revisions.

Content.

The instrument measures participation in 5 domains: domestic life (8 activities), interpersonal interactions and relationships (8 activities), major life areas (3 activities), transportation (2 activities), and community/recreational and civic life (5 activities).

Number of items.

For each of the 26 activities, there are 3 questions, giving a total of 78 items. The first measures frequency or duration of engagement (objective participation), the second measures how important engagement in the activity is, and the third refers to whether they would like to change their current level of engagement (subjective participation).

Response options/scale.

For objective participation, response options are measured as amounts: percentage of the activity that an individual is responsible for (domestic life domain), number of hours per day, week, or month the activity is engaged in (major life areas domain), or the frequency of occurrence of the activity in a day, week, or month (all other domains). For subjective participation the importance of each of the 26 activities to well-being is coded using the response options most, very, moderate, little, or not important (scored 4–0), and any change to current level of engagement in that activity is rated as same, less, or more.

Recall period for items.

Varies from current time up to 1 month.

Endorsements.

None.

Examples of use.

Mascialino G, Hirshson C, Egan M, Cantor J, Ashman T, Tsaousides T, et al. Objective and subjective assessment of long-term community integration in minority groups following traumatic brain injury. Neurorehabilitation 2009;24:29–36.

Cantor JB, Ashman T, Gordon W, Ginsberg A, Engmann C, Egan M, et al. Fatigue after traumatic brain injury and its impact on participation and quality of life. J Head Trauma Rehabil 2008;23:41–51.

Practical Application

How to obtain.

The instrument is included in the appendix of the original article by Brown et al (13) and scoring instructions are available from the authors on request. No costs are reported.

Method of administration.

Self-completion questionnaire or by interview/telephone.

Scoring.

The scoring for the POPS is normalized using data from a sample of patients with traumatic brain injury and those with no disability.

Scoring objective participation.

First, all hour and frequency items are converted to a single base, frequency, or duration per month. Standardized scores are then calculated by subtracting from each person's raw score for each item the mean score for the item for the combined population norm and dividing by the SD for the population. To control for outliers standardized scores are set to −3 and +3. Standardized scores are then weighted by a factor that was the average of the mean importance rating of the population so that all items do not have equal weighting (things that are done more have a greater weighting). The total score for objective participation is calculated as the average of the weighted standardized scores of the 26 items. Subscale scores can be calculated as the average standardized scores for the standardized samples.

Scoring subjective participation.

For each of the 26 items, multiply the importance score by the satisfaction score, where a person who is wanting less or more was scored as −1, and his or her being satisfied with current level was scored as +1. Scores can range from +4, indicating a most important area of life that the person is engaging in at a satisfactory level, to −4, indicating an equally important area of life that the person wants to do either less of or more. The subjective participation total score is the mean of the 26 activities. A computer is necessary to score this tool. Further scoring instructions are available from the author and may give more detail on how missing data should be handled in the scoring algorithm.

Score interpretation.

The score range for subjective participation is −4 to 4. The score range for objective participation is −3 to 3. Higher scores indicate greater participation and there are no recommended cut-offs. Normative values are not available for either scale, although data on the importance of the 26 items are given from a sample of patients with no disability. These data are included in the scoring algorithm for the tool.

Respondent burden.

No information is give on item difficulty, although the instrument was successfully completed by 575 participants included in the psychometric evaluation.

Administrative burden.

No information is given on time to administer the POPS. The POPS can be used as a self-report measure so difficulties for an administrator would be minimal and training would be minimal. The scoring of the tool would be done by computer and although time may be needed to set up the algorithms, once achieved, they should be able to be used with ease.

Translations/adaptations.

Only available in English.

Psychometric Information

Method of development.

The items originate from the Living After Traumatic Brain Injury instrument, which was drawn from a variety of existing instruments (mainly the Craig Handicap Assessment and Reporting Technique, Community Integration Questionnaire, Bigelow Quality of Life Questionnaire, and the Community Re-entry Questionnaire), although the process of selection is not reported. Additional items have been added, although there is no justification given for their inclusion. Patients were not used in development. Subscales were generated to fit with the International Classification of Functioning domains. Item-response theory was not used. Two separate subscales can be generated (PO and PS), using scoring algorithms available from the author. In addition, domain scores can be calculated for the 5 domains covered in the questionnaire.

Acceptability.

The questionnaire is readable; however, no specific details are given on item-level missing data rates. In the scoring of the POPS, the authors offered an alternative scoring using deviation scores due to the skewed nature of some of the distributions. This suggests that floor and ceiling effects may be present in the data; however, floor and ceiling effects may only apply to the sample of brain injury patients included in this study.

Reliability.

Internal consistency of scales ranged from 0.37–0.89, except for transportation, which was lower for both PO and PS. Test–retest reliability was completed on a subsample of patients with traumatic brain injury (n = 65). The time period for test–retest reliability was between 1 and 3 weeks. Both the PO and PS scores had good test–retest reliability (intraclass correlation coefficient 0.75 and 0.8, respectively); however, the test–retest reliability of the PO and PS scores for each domain varied between 0.28 and 0.89. No information is given on minimal detectable change or SEM.

Validity.
Face/content validity.

The items have been selected from other participation tools; however, little information is given on item face validity. It is not clear how the items were selected for the tool.

Construct validity.

There is a weak correlation between PO and PS total scores (0.23 for mild traumatic brain injury, 0.21 for moderate-severe traumatic brain injury).

Four other measures of positive-negative affect or satisfaction judgments (Brain Injury Screening Questionnaire, Beck Depression Inventory II, Flanagan Quality of Life Scale, and Life 3) had stronger correlations with PS than PO total scores. Current age, injury severity, and years post–traumatic brain injury onset were not related to PO or PS total scores. Overall, there was moderate evidence to support the construct validity of the tool, although not all predefined hypotheses were supported in the data.

Ability to detect change.

No evidence is given for the tool's responsiveness or minimum clinically important difference.

Quality of psychometric testing.

The design of the questionnaire is adequate and is generated by “experts.” The quality of assessment of the internal consistency is acceptable.

The study of reliability was of reasonable quality. There is no information on measurement error, and the face and content validity were not clearly reported. Construct validity was tested with regard to the hypothesis and relevant instruments. Responsiveness was not assessed, and there was no information on minimum important change. In terms of interpretability, objective and subjective participation are different constructs. Further work is required to interpret scores for each scale. Overall, further testing is required on missing data, face validity, and responsiveness and in musculoskeletal populations for use.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

Measures both objective and subjective participation and allows patients to indicate the areas that they would like clinicians to target.

Caveats and cautions.

The process used to select the 26 items for the POPS as a subset of those in the Living Life After Traumatic Brain Injury Study is unclear. The process for generating new items for POPS (e.g., in the transportation section) is also not clearly defined. No information is given regarding the interpretability of the scale units of the PO and PS scales. The scoring of the instrument is quite complex so it would be difficult to apply in clinical practice. Only pilot data are given in the assessment of the psychometric properties of the tool, so further work is needed in this area, especially around minimum clinically important difference and interpretation of scale scores.

Clinical usability.

POPS scale has the potential to facilitate decisions on patient care, although these require further testing. Further testing of responder burden would be useful to guide clinical use. Clinical use may be limited by the scoring method, which requires a computer.

Research usability.

Overall the psychometric data presented support use for research, although further psychometric testing is needed. The questionnaire can be self-administered; however, computer-generated scoring algorithms are needed to score the tool. Further testing is required on responsiveness.

RATING OF PERCEIVED PARTICIPATION (ROPP)

  1. Top of page
  2. IMPACT ON PARTICIPATION AND AUTONOMY (IPA)
  3. KEELE ASSESSMENT OF PARTICIPATION (KAP)
  4. PARTICIPATION MEASURE FOR POST-ACUTE CARE (PM-PAC)
  5. PARTICIPATION OBJECTIVE, PARTICIPATION SUBJECTIVE (POPS)
  6. RATING OF PERCEIVED PARTICIPATION (ROPP)
  7. THE PARTICIPATION SCALE
  8. DISCUSSION
  9. AUTHOR CONTRIBUTIONS
  10. REFERENCES

Description

Purpose.

ROPP was developed to describe patient's perceived level of participation in the context of where they live and to direct rehabilitation interventions according to the patient's desire to change a particular domain. The ROPP was published in 2007 by Sandstrom and Lundin-Olsson (14). There are no revisions or updates.

Content.

There are 22 statements about participation in different life situations, which are grouped into 9 different areas. Linked to each statement there are questions about participation level, satisfaction with participation, and if support is desired. Domains covered are: personal care, mobility, communication, social relationships, domestic life and caring for others, education, work and employment, economic life, and social and civic life.

Number of items.

There are 22 statements with 3 questions per statement for a total of 66 items. A participation score (range from 0–88) can be derived using only the first question (participation level) for each of the 22 items.

Response options/scale.

Perceived participation (not restricted, not applicable/mildly restricted/moderately restricted/very restricted/severely restricted); satisfaction (yes/no), need for support to change participation level (yes/no).

Recall period for items.

Current situation.

Endorsements.

None.

Examples of use.

None, other than the original article (14).

Practical Application

How to obtain.

Questionnaire is included in the original article (14).

Method of administration.

Self-administered questionnaire.

Scoring.

Each item is scored 0 (no restriction) to 4 (severe restriction). The scale score is calculated by adding the score for each item (0–88). Furthermore, for each item participants rated whether they were satisfied with their level of participation (yes/no) and whether they wanted support to change their level of participation (yes/no). At the end of the questionnaire, participants are asked to select which, out of the 9 domains given, are the 3 most important ones for changing the level of participation. No instructions for missing data.

Score interpretation.

Increasing score means increasing participation restriction. There are no normative values.

Respondent burden.

Takes 15–30 minutes to complete. When asked about the time to complete, 85% of responders were positive, 11% neutral, and 4% were negative.

Administrative burden.

Not discussed although the instrument is self-report and expected to be minimal.

Translations/adaptations.

English. Developed in neurologic population. A Swedish version may exist.

Psychometric Information

Method of development.

Items were selected from the 9 domains of the International Classification of Functioning that were judged to be important for adults with mild to severe signs and symptoms of neurologic disease. Multidisciplinary staff then reviewed the proposed items for relevance, comprehensibility, and clarity. Items were adapted following pilot testing and cognitive interviews with patients. Subscales were generated to map to the International Classification of Functioning. Item-response theory was not used.

Acceptability.

Questions were easy to understand (68% said the questions were understandable, 14% were neutral, and 18% were negative). Layout could be difficult to grasp, and changed for the final version of the questionnaire. 1.2% of data were missing. Floor effects occur and scores range from 0–60 with a mean ± SD 20.6 ± 1.8.

Reliability.
Internal consistency.

Cronbach's α = 0.90 for the total score. Five of 6 domains (with 2 or more items α = 0.73 to 0.89, and 0.50 for economic life).

Test–retest.

Mean ± SD scores between test and retest was 1.13 ± 3.93. Difference between test and retest total scores calculated by intraclass correlation coefficient (1,1) and (3,1) were 0.97 (95% confidence interval [95% CI] 0.94–0.98) and 0.97 (95% CI 0.95–0.98), respectively. The within-subject SD was 2.9 points. The difference between 2 measurements for the same person was <7.9 points for 95% of pairs of observations.

Perceived participation, for 20 items weighted kappa was >0.70. Agreement on the selection of domains with a kappa above 0.80 in 7 domains and above 0.70 in the remaining 2 domains.

Validity.

For face validity, 61% of patients were positive that the instrument measured participation, 23% were neutral, and 16% were negative; 85% of professionals were positive, 14% were neutral, and none were negative. Agreement between perceived participation and satisfaction, weighted kappa was at least 0.70 for all items. Agreement between perceived participation and desired support, weighted kappa for all reached at least 0.80.

Ability to detect change.

Responsiveness and minimum clinically important difference were not tested.

Quality of psychometric testing.

Internal consistency showed reasonable quality.

Reliability was of reasonable quality, measurement error was adequately tested, and there was reasonable quality study of face validity. Construct validity was only tested between perceived participation and satisfaction. Responsiveness was not tested; there is no information on minimum important change, and no information on interpretability. No item-response theory was used in development. Internal consistency and reliability were assessed, and both were of reasonable quality. Overall, there is a need for further testing of construct validity, interpretability, and responsiveness.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

The instrument measures all participation domains and allows people to indicate if they require interventions to improve their participation.

Caveats and cautions.

Requires further psychometric testing of construct validity and responsiveness.

Clinical usability.

This tool has the potential to aid clinical practice by allowing patients to indicate which participation areas they desire help with. Psychometric testing provides minimal support for use in clinical settings, and more is required. Administrative burden was not discussed. Responder burden may limit use, but appears minimal.

Research usability.

Psychometric testing provides some support for use in observational studies, although more is required. Administrative burden not discussed. Responder burden may limit but appears minimal.

THE PARTICIPATION SCALE

  1. Top of page
  2. IMPACT ON PARTICIPATION AND AUTONOMY (IPA)
  3. KEELE ASSESSMENT OF PARTICIPATION (KAP)
  4. PARTICIPATION MEASURE FOR POST-ACUTE CARE (PM-PAC)
  5. PARTICIPATION OBJECTIVE, PARTICIPATION SUBJECTIVE (POPS)
  6. RATING OF PERCEIVED PARTICIPATION (ROPP)
  7. THE PARTICIPATION SCALE
  8. DISCUSSION
  9. AUTHOR CONTRIBUTIONS
  10. REFERENCES

Description

Purpose.

The Participation Scale was developed to measure participation in comparison with a “peer norm.” It was developed for people with leprosy or disability, spinal cord injury, and polio or other “stigmatized” conditions and originally published in 2006 by Brakel et al (15). There are no updates or revisions.

Content.

The Participation Scale measures all participation International Classification of Functioning domains except for general tasks and demands.

Number of items.

18 items.

Response options/scale.

There are 5 response options: 0 = no restriction; 1 = some restriction, but no problem; 2 = small problem; 3 = medium problem; 5 = large problem; 4 = no response.

Recall period for items.

Not reported.

Endorsements.

None.

Examples of use.

Singh S, Sinha AK, Banerjee BG, Jaswal N. Participation level of the leprosy patients in society. Indian J Leprosy 2009;81:181–7.

Lesshafft H, Heukelbach J, Barbosa JC, Rieckmann N, Liesenfeld O, Feldmeier H. Perceived social restriction in leprosy-affected inhabitants of a former leprosy colony in northeast Brazil. Leprosy Rev 2010;81:69–78.

Wee J, Lysaght R. Factors affecting measures of activities and participation in persons with mobility impairment. Disability Rehabil 2009;31:1633–42.

Nicholls PG, Bakirtzief Z, Van Brakel WH, Das-Pattanaya RK, Raju MS, Norman G, et al. Risk factors for participation restriction in leprosy and development of a screening tool to identify individuals at risk. Leprosy Rev 2005;76:305–15.

Practical Application

How to obtain.

The instrument is included in the original article (15). There is no cost to obtain it.

Method of administration.

Interview-based instrument.

Scoring.

Severity score <13 = 1, 13–22 = 2, 23–33 = 3, 34–53 = 4, >53 = 5, (where 1 = no significant restriction, 5 = extreme restriction). Not reported if a computer is necessary.

Score interpretation.

Not clearly presented. Greater score equals greater restriction. Scored 1–5. Arbitrary severity categories provided. Normative values not reported.

Respondent burden.

It takes 20 minutes to complete. Item difficulty not reported.

Administrative burden.

20 minutes to administer. Difficulty for administrator not reported. Training needed, but do not need to be a specialist.

Translations/adaptations.

The Participation Scale is available in 6 other languages (for use in Brazil, Nepal, and India [Hindi, Bengali, Telugu and Tamil], although it is not clear how these have been tested).

Psychometric Information

Method of development.

Items were generated from field work, observation, and focus groups. The role of patients is unclear. No subscales generated. Item-response theory was not used.

Acceptability.

Positive feedback received, useful or very useful. No information on missing data. No specific information on floor or ceiling effects.

Reliability.

Internal consistency by Cronbach's α = 0.92. Item to total correlation was 0.32–0.73. The intraclass correlation coefficients for interrater and intrarater reliability were 0.80 and 0.83, respectively. Minimal detectable change and SEM were not reported.

Validity.

In terms of content validity, the instrument covers all International Classification of Functioning participation domains except for general tasks and demands. Construct validity significantly correlated with an expert score, Eyes, Hands, Feet outcome measure and patient self-assessment.

Ability to detect change.

Responsiveness was assessed using post–life-changing event. The measure was considered responsive if a statistically significant difference could be demonstrated between baseline and the post–life- changing event, if the minimum difference was at least 10 points. Minimum clinically important difference was not assessed.

Quality of psychometric testing.

Internal consistency was calculated and showed an acceptable level, and an acceptable level of test–retest reliability was shown. There was no information on measurement error, and face and content validity were not evaluated. Construct validity was tested against expert opinion and the Eyes, Hands, Feet measurement tool (used in the populations with leprosy to measure limitation). Responsiveness was not tested, and there was no information on minimum important change and interpretability. No item-response theory was used in development. Overall, there is a need for further testing of construct validity, interpretability, and responsiveness.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

The instrument measures participation comprehensively.

Caveats and cautions.

More detailed analysis needed to evaluate all psychometric properties. Has only been tested in people with stigmatized conditions/those with disability. No specific recall period. Not clear if evaluation has been done on English version.

Clinical usability.

Takes 20 minutes to complete and needs a trained administrator. No assessment of administrative burden. Unclear if use is limited by responder burden. Requires more psychometric testing.

Research usability.

Requires more psychometric testing.

DISCUSSION

  1. Top of page
  2. IMPACT ON PARTICIPATION AND AUTONOMY (IPA)
  3. KEELE ASSESSMENT OF PARTICIPATION (KAP)
  4. PARTICIPATION MEASURE FOR POST-ACUTE CARE (PM-PAC)
  5. PARTICIPATION OBJECTIVE, PARTICIPATION SUBJECTIVE (POPS)
  6. RATING OF PERCEIVED PARTICIPATION (ROPP)
  7. THE PARTICIPATION SCALE
  8. DISCUSSION
  9. AUTHOR CONTRIBUTIONS
  10. REFERENCES

This review has identified 6 instruments that have acceptable levels of evidence of face, content, and construct validity, and reliability to support their application to measure participation and social function at a single time point in clinical practice or research. Each instrument has individual strengths and weaknesses that may aid selection for use and additional reviews on measures of participation may provide further insight (21–23). At present, there is no need to develop more instruments; however, the current instruments should be tested more rigorously to support or refute their use. This suggestion is also relevant for other instruments not included in this review such as the Social Role Participation questionnaire (1) and the Valued Life Activities Questionnaire (24), which we are aware are freely available from their authors and are currently being tested further. None of the instruments highlighted in this review have been developed to measure participation or social function specifically in musculoskeletal populations, but are for use in other populations (e.g., general [11] or people with neurologic conditions [15]). This review has allowed an evaluation of the current status of participation/social function measurement and shows that there have been greater gains in developing methods in other fields from which the musculoskeletal community can benefit. The Participation Measure for Post-Acute Care (PM-PAC) has been soundly developed for administration using Computerized Adaptive Testing (i.e., PM-PAC-CAT) (25). Psychometric testing suggests that this tool has the ability to detect change and could be useful in clinical practice and intervention studies. However, the PM-PAC-CAT was not included in the review because it is not freely accessible.

We referred to the Consensus-Based Standards for the Selection of Health Measurement Instruments checklist to review the methodologic quality of psychometric studies, although the amount of testing that has been done limits judgment on the quality of, and support for using, these instruments (26, 27). For all instruments, further testing is required in musculoskeletal populations to explore responsiveness and interpretation of scores. Longitudinal measurement of participation restriction needs to be explored further to ascertain the best method to capture change over time. The multidimensional and dynamic nature of participation presents a challenge that may be solved by focusing on individual aspects of participation. Issues of “response shift” may occur, with some dimensions becoming less important over time (e.g., restrictions in work), whereas others become increasingly relevant to people (e.g., self-care or mobility) (28). Testing of the unidimensionality of the Impact on Participation and Autonomy Scale and PM-PAC using factor analysis demonstrated that different areas of participation exist within these instruments. These should be assessed as different subscales, rather than be incorporated within a single scale, which may be assessing multiple concepts. The dimensionality of the other 4 instruments has not yet been investigated, and the identification of subscales and linked factors may help the development of methods to manage participation problems.

We took a stringent approach to selecting instruments for this review. Searching for instruments that capture participation/social function can unearth a large number of instruments because of similar and related concepts. It must be noted that there are a number of instruments that exist to provide detailed measurement of specific areas of participation (e.g., work), which are beyond the remit of this review. The field of participation and social function is evolving and our search identified a number of instruments that did not meet our criteria. For example, the social functioning scale of the Medical Outcomes Study Short Form 36 (29) has been used to measure participation (6). We excluded this instrument because of the costs associated with its use. It is also unclear whether the 2 items that make up this scale refer solely to participation, and they certainly do not cover the various dimensions covered by the instruments included in this review. Similarly the 2 items that constitute the Activities and Participation Questionnaire (30), which we also excluded from our review, capture “usual activities” and do not refer specifically to participation or social function. There are a number of other instruments which include some items that measure participation and are generic (e.g., Sickness Impact Profile [31]), have been designed to either measure a specific aspect of participation (e.g., Re-integration to Normal Living [32]), general functioning (e.g., WHODAS II [33]) or include other concepts, such as well-being (e.g., PIPP [34]). These instruments are applicable and may be very relevant in populations with musculoskeletal conditions, but do not exclusively assess participation or social function, and hence were not selected for our review.

Measuring participation offers the potential to capture the impact of musculoskeletal conditions in the context in which people live. However, its measurement is in its infancy. Our search has highlighted 6 instruments that could be used to measure participation/social function in adult musculoskeletal populations and have demonstrated minimally acceptable psychometric properties for use in clinical practice or research. None of these instruments as yet has been shown to have a clear advantage over the others. We stress that further psychometric testing is required to assess their measurement properties and applicability in a range of populations and settings, and therefore question the need to develop more instruments prior to such testing of existing instruments. This is important to support their use in practice and research for assessing the levels of restrictions and examining the success of interventions to maintain and improve participation and social function in those with musculoskeletal conditions.

REFERENCES

  1. Top of page
  2. IMPACT ON PARTICIPATION AND AUTONOMY (IPA)
  3. KEELE ASSESSMENT OF PARTICIPATION (KAP)
  4. PARTICIPATION MEASURE FOR POST-ACUTE CARE (PM-PAC)
  5. PARTICIPATION OBJECTIVE, PARTICIPATION SUBJECTIVE (POPS)
  6. RATING OF PERCEIVED PARTICIPATION (ROPP)
  7. THE PARTICIPATION SCALE
  8. DISCUSSION
  9. AUTHOR CONTRIBUTIONS
  10. REFERENCES
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