Quality of patient- and proxy-reported outcomes for children with impairment of the upper extremity: a systematic review using the COSMIN methodology

Abstract

Background As patient-reported outcome measures (PROMs) have become of significant importance in patient evaluation, adequately selecting the appropriate instrument is an integral part of pediatric orthopedic research and clinical practice. This systematic review provides a comprehensive overview of PROMs targeted at children with impairment of the upper limb, and critically appraises and summarizes the quality of their measurement properties by applying the COnsensus-based Standards for selection of health Measurement INstruments (COSMIN) methodology. Methods A systematic search of the MEDLINE and EMBASE databases was performed to identify relevant publications reporting on the development and/or validation of PROMs used for evaluating children with impairment of the upper extremity. Data extraction and quality assessment (including a risk of bias evaluation) of the included studies was undertaken by two reviewers independently and in accordance with COSMIN guidelines. Results Out of 6423 screened publications, 32 original articles were eligible for inclusion in this review, reporting evidence on the measurement properties of 22 self- and/or proxy-reported questionnaires (including seven cultural adaptations) for various pediatric orthopedic conditions, including cerebral palsy (CP) and obstetric brachial plexus palsy (OBPP). The measurement property most frequently evaluated was construct validity. No studies evaluating content validity and only four PROM development studies were included. The methodological quality of these development studies was either ‘doubtful’ or ‘inadequate’. The quantity and quality of the evidence on the other measurement properties of the included questionnaires varied substantially with insufficient sample sizes and/or poor methodological quality resulting in significant downgrading of evidence quality. Conclusion This review provides a comprehensive overview of currently available PROMs for evaluation of the pediatric upper limb. Based on our findings, none of the PROMs demonstrated sufficient evidence on their measurement properties to justify recommending the use of these instruments. These findings provide room for validation studies on existing pediatric orthopedic upper limb PROMs (especially on content validity), and/or the development of new instruments.

Arabic Patient-Reported Measures of Activity and Participation for Children: A Systematic Review of Psychometric Properties

“…Among the 10 Arabic PROMs included in the review, none demonstrated sufficient properties for all psychometrics described in COMSIN guidelines. Our findings are consistent with the findings of previous systematic reviews that used COMSIN tools to assess the methodological quality of pediatric PROMs for participation [ 32 ], upper limb impairments [ 33 ], and pain [ 34 ]. All reviews concluded that the methodological quality of the PROMs reviewed did not reach sufficient psychometrics properties.…”

Quality of patient- and proxy-reported outcomes for children with impairment of the lower extremity: A systematic review using the COnsensus-based Standards for selection of health Measurement INstruments methodology

“…This systematic review is a continuation of the joined effort to provide a comprehensive overview of the evidence on the psychometric properties of PROMs used for both upper and lower extremities. 9 , 10 With the use of the updated COSMIN methodology, to ensure a high-quality assessment, a total of 6919 publications were screened, resulting in 13 PROMs reporting a total of 112 psychometric properties. The results of this study increase the knowledge on proper use of PROMs through an evidence-based review and extensive recommendations.…”

“…A comprehensive overview of PROMs used for evaluating upper extremity problems has been previously published as part of this joint effort. 9 This review will provide an extensive overview of PROMs used in orthopedic patients with a lower extremity impairment.…”

Reliability of the Gait Outcomes Assessment List questionnaire

“…parent, primary caregiver). They are an integral part of patient‐centered care and increasingly important in understanding treatment effectiveness 1,2 . The usefulness of any outcome assessment is dependent on the strength of its psychometric properties, that is, validity, reliability, and responsiveness to change 3,4 .…”

“…They are an integral part of patient-centered care and increasingly important in understanding treatment effectiveness. 1,2 The usefulness of any outcome assessment is dependent on the strength of its psychometric properties, that is, validity, reliability, and responsiveness to change. 3,4 Many of the patient-reported outcome measures (PROMs) available for children with cerebral palsy (CP) demonstrate insufficient evidence of psychometric properties 5-8 and do not meet the COnsensus-based Standards for the selection of health Measurement INstruments.…”