Measurement properties of questionnaires assessing participation in children and adolescents with a disability: a systematic review

Rainey, Linda; Nispen, Ruth M. A. van; Zee, Carlijn van der; Rens, Ger van

doi:10.1007/s11136-014-0743-3

Cited by 47 publications

(51 citation statements)

References 52 publications

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“…Frequently, information on measurement properties of instruments is combined across multiple populations (e.g. children with various and diverse conditions and disabilities) without analysing subgroups of different diagnostic groups . This can provide a broad overview of available and examined measures.…”

Section: Discussionmentioning

confidence: 99%

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties

Resch

Kruijsbergen

Hurks

et al. 2020

Develop Med Child Neuro

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Aim To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. Method Five databases were searched. Instruments that quantified ‘attendance’ and/or ‘involvement’ aspects of participation according to the family of participation‐related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. Results Thirty‐seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. Interpretation Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines. What this paper adds Twelve instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) aligned with attendance/involvement. Seven instruments have some psychometric evidence supporting their use with children with CP. For children with ABI, only the Child and Adolescent Scale of Participation has shown preliminary evidence of measurement properties.

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Section: Discussionmentioning

confidence: 99%

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties

Resch

Kruijsbergen

Hurks

et al. 2020

Develop Med Child Neuro

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“…Enhancement of participation is often reported as the ultimate health and educational outcome and the primary goal of rehabilitation . Previous systematic literature reviews have examined the properties of available participation measurement tools, reported participation restrictions for people with disabilities, and identified supports and barriers to participation in people with disabilities . However, literature describing evidence‐based approaches to improving participation in people with disabilities is limited.…”

mentioning

confidence: 99%

The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review

Adair

Ullenhag

Keen

et al. 2015

Develop Med Child Neuro

152

141

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CAPEChildren's Assessment of Participation and Enjoyment RCT Randomized controlled trial AIM Enhancement of participation has been described as the ultimate outcome for health and educational interventions. The goal of this systematic review was to identify and critically appraise studies that aimed to improve the participation outcomes of children with disabilities.METHOD Nine databases that index literature from the fields of health, psychology, and education were searched to retrieve information on research conducted with children with disabilities aged between 5 years and 18 years. Articles were included if the author(s) reported that participation was an intended outcome of the intervention. The articles included were limited to those reporting high-level primary research, as defined by Australia's National Health and Medical Research Council evidence hierarchy guidelines. No restrictions were placed on the type of intervention being investigated.RESULTS Seven randomized controlled or pseudo-randomized studies were included. Only three of these studies identified participation as a primary outcome. Both individualized and group-based approaches to enhancing participation outcomes appeared to be effective. Studies of interventions with a primary focus on body function or activity level outcomes did not demonstrate an effect on participation outcomes.

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“…The CASP measures children's extent of participation and restrictions in home, school and community life situations and activities compared with same‐age peers as reported by a parent or caregiver . The CASP was selected because, at the time of this study, it was evaluated most extensively, generally showing moderate positive results . It has been used in children from 3 years of age, and the Dutch version showed to have good measurement properties among a population of children with acquired brain injury …”

Section: Methodsmentioning

confidence: 99%

“…This instrument is not specifically targeted at children with VI, but is aimed at the evaluation of eye‐related concerns. As such, no instrument is currently available to measure developmentally‐appropriate participation specifically for children with VI …”

Section: Introductionmentioning

confidence: 99%

Psychometric evaluation of a new proxy‐instrument to assess participation in children aged 3–6 years with visual impairment: PAI‐CY 3‐6

Elsman

Nispen

Rens

2019

Ophthalmic Physiologic Optic

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Purpose The Participation and Activity Inventory for Children and Youth 3–6 years (PAI‐CY 3‐6) was recently developed to assess the participation needs of children with visual impairment (VI) by means of parent‐proxy report. This study reports on its psychometric properties. Methods Parents of children aged 3–6 years registered at two low vision rehabilitation centers in the Netherlands were invited to participate and completed the 52‐item PAI‐CY. Satisfaction with the PAI‐CY 3‐6 was determined using an evaluation form. Basic item analyses was conducted, after which an item response theory (IRT) model (i.e. the graded response model, GRM) was fitted. Deletion of items was informed by results of item analyses, fulfillment of IRT assumptions, differential item functioning, fit to the GRM and item information content. Face and content validity were considered; professionals from low vision rehabilitation centers were asked for their opinion in the item deletion process. After obtaining a satisfactory set of items, known‐group validity, concurrent validity and test‐retest reliability were also investigated. Results Data of 237 parents were included in the analyses. Various aspects of the PAI‐CY 3‐6 were perceived as neutral to positive by over 85% of the respondents. After removing 17 items, the remaining 35 items reflected satisfactory fit to the GRM. Known‐group validity was supported, since participants with more severe VI and comorbidity scored significantly worse than those with less severe VI and without comorbidity after correcting for potential confounders. Test‐retest reliability was adequate, and the PAI‐CY showed to have good concurrent validity. Feedback from professionals motivated the maintenance of 3 of the 17 deleted items, although not included in the scoring. Furthermore, two new items were added, resulting in a 40‐item instrument. Conclusions The PAI‐CY 3‐6 has sound psychometric properties and can now be used to assess the participation needs of children aged 3–6 years with VI by means of proxy. Implementation in routine low vision rehabilitation care enables further optimization and investigation of its acceptability and feasibility.

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Measurement properties of questionnaires assessing participation in children and adolescents with a disability: a systematic review

Cited by 47 publications

References 52 publications

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties

The effect of interventions aimed at improving participation outcomes for children with disabilities: a systematic review

Psychometric evaluation of a new proxy‐instrument to assess participation in children aged 3–6 years with visual impairment: PAI‐CY 3‐6

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