Optimizing the Psychosocial Function Measures in the International Consortium for Health Outcomes Measurement Standard Set for Cleft

Pdf Summary

This study evaluated whether the psychosocial patient-reported outcome measures (PROMs) in the ICHOM Standard Set for cleft lip and palate are all necessary, using CLEFT-Q data from 3,067 patients at three international cleft centers.<br /><br />The authors examined correlations among six CLEFT-Q scales: psychological function, social function, school function, face, speech function, and speech-related distress. Strong correlations were found between social function and both psychological function (r up to 0.76) and school function (r up to 0.85), suggesting substantial overlap. Psychological and school function were only moderately correlated, indicating they may capture different aspects of psychosocial well-being. The face scale showed moderate associations with psychosocial scales, while speech-related scales were weakly related.<br /><br />Regression analyses showed that psychological function scores declined with age, but social and school function scores did not significantly change over time. In the Dutch subgroup (353 patients), no patient characteristics were significantly associated with psychosocial scores, though socioeconomic trends suggested that lower status might relate to poorer outcomes. Referral to psychosocial care was more likely among patients with lower psychological, school, and face scores, and among those with a genetic syndrome.<br /><br />The main conclusion is that the CLEFT-Q social function scale adds limited unique information because it overlaps heavily with psychological and school function scales. The authors recommend reconsidering its inclusion in the ICHOM Standard Set, and suggest keeping only psychological function and school function to reduce burden on patients and clinicians. They also recommend adding assessment time points during the teenage years and collecting more detailed demographic and socioeconomic information.

Keywords

cleft lip and palate

CLEFT-Q

patient-reported outcome measures

psychosocial function

social function

psychological function

school function

speech distress

ICHOM Standard Set

pediatric cleft care