Rasch Analysis of Patient- and Parent-Reported Outcome Measures in the International Consortium for Health Outcomes Measurement Standard Set for Cleft Lip and Palate

ObjectivesThe aim of this study was to evaluate the psychometric performance patient- and parent-reported measures in International Consortium for Health Outcomes Measurement (ICHOM) Standard Set Cleft Care, identify ways improving concept coverage.MethodsData from 714 patients with cleft lip and/or palate, aged 8 9, 10 12.5, 22 years were collected between November 2015 April 2019 at Erasmus University Medical Center, Boston Children’s Hospital, Duke participating sites CLEFT-Q Phase 3 study. The includes 9 scales, Nasal Obstruction Symptom Evaluation (NOSE) questionnaire, Child Oral Impact Profile–Oral Symptoms Scale (COHIP-OSS), Intelligibility Context (ICS). Targeting, item-fit statistics, thresholds item responses, measurement precision (PSI) analyzed using Rasch theory.ResultsThe proportion sample score within each instruments range varied 69% (ICS) 92% (CLEFT-Q teeth COHIP-OSS). Specific problems individual items NOSE COHIP-OSS questionnaires noted, such as poor fit model disordered (6 10). Reliability measured PSI above 0.82 ICS all but one scale (speech distress). PSIs lowest (0.43) questionnaire (0.35).ConclusionThe components facial appearance, psychosocial function, speech domains are valid measures; however, function oral health not sufficiently covered by eating drinking, NOSE, COHIP-OSS, these may be accurate enough stratify cleft-related outcomes.