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Background  To assess participation of children with visual impairment, the Participation and Activity Inventory for Children and Youth (PAI-CY) was recently developed. This study assessed some initial psychometric properties of the PAI-CY 13–17 years version, and investigated its feasibility.    Methods  Adolescents with visual impairment and their parents ( n  = 72 dyads) completed the self-report and proxy-report version of the 58-item PAI-CY, an evaluation form and several questionnaires measuring related constructs. Item deletion was informed by item responses, inter-item correlations, test-retest reliability, adolescent-parent agreement and participants’ feedback. Known-group validity and concurrent validity with related questionnaires were investigated for the final item-set.    Results  Twelve items had > 20% missing values, whereas 39 items showed floor effects. Eight item pairs showed high inter-item correlations. Test-retest reliability was acceptable for most items (kappa ≥0.4). Evaluation forms showed that over 90% of respondents was neutral to very positive regarding several feasibility aspects such as administration time and comprehensiveness. Adolescent-parent agreement was mostly low. These results informed the deletion of three items. Known-group validity seemed adequate since PAI-CY scores were significantly worse for participants with comorbidity compared to those without. A trend towards worse scores for participants with more severe visual impairment was also observed. Correlations between the PAI-CY and related questionnaires confirmed concurrent validity.    Conclusions  Initial psychometric properties of the PAI-CY 13–17 were acceptable, although more work is needed to assess other psychometric properties, such as the underlying construct. Following implementation in low vision care to assess participation needs, enabling larger samples, acceptability of the PAI-CY 13–17 to end-users should be carefully monitored, especially if alterations are made based on the current study.

journal of patient-reported outcomes

First stage psychometric testing of a new instrument for adolescents with visual impairment: the Participation and Activity Inventory for Children and Youth (PAI-CY) 13–17 years