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

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

Barriers and Facilitators to the International Implementation of Standardized Outcome Measures in Clinical Cleft Practice

Objective: To identify barriers and facilitators to international implementation of a prospective system for standardized outcomes measurement in cleft care. Design: Cleft teams that have implemented the International Consortium for Health Outcomes Measurement Standard Set for cleft care were invited to participate in this 2-part qualitative study: (1) an exploratory survey among clinicians, health information technology professionals, and project coordinators, and (2) semistructured interviews of project leads. Thematic content analysis was performed, with organization of themes according to the dimensions of the reach, effectiveness, adoption, implementation and maintenance (RE-AIM) framework: reach, effectiveness, adoption, implementation, and maintenance. Results: Four cleft teams in Europe and North America participated in this study. Thirteen participants completed exploratory questionnaires and 5 interviewees participated in follow-up interviews. Survey responses and thematic content analysis revealed common facilitators and barriers to implementation at all sites. Teams reach patients either via email or during the clinic visit to capture patient-reported outcomes. Adopting routine data collection is enhanced by aligning priorities at the organizational and cleft team level. Streamlining workflows and developing an efficient data collection platform are necessary early on, followed by pilot testing or stepwise implementation. Regular meetings and financial resources are crucial for implementing, sustaining, analyzing collected data, and providing feedback to health care professionals and patients. Fostering patient-centered care was articulated as a positive outcome, whereas time presented challenges across all RE-AIM dimensions. Conclusions: Identified themes can inform ongoing implementation efforts. Intentionally investing time to lay a sound foundation early on will benefit every phase of implementation and help overcome barriers such as lack of support or motivation

Cleft Lip Repair Competence Can Be Evaluated with High-fidelity Simulation

Background:. Demonstrating competency before independent practice is increasingly important in surgery. This study tests the hypothesis that a high-fidelity cleft lip simulator can be used to discriminate performance between training levels, demonstrating its utility for assessing procedural competence. Methods:. During this prospective cohort study, participants performed a unilateral cleft lip repair on a high-fidelity simulator. Videos were blindly rated using the Objective Structured Assessment of Technical Skills (OSATS) and the Unilateral Cleft Lip Repair Competency Assessment Tool (UCLR). Digital measurement of symmetry was estimated. Influence of training level and cumulative prior experience on each score was estimated using Pearson r. Results:. Participants (n = 26) ranged from postgraduate year 3 to craniofacial fellow. Training level correlated best with UCLR (R = 0.4842, P = 0.0122*) and more weakly with OSATS (R = 0.3645, P = 0.0671), whereas cumulative prior experience only weakly correlated with UCLR (R = 0.3450, P = 0.0843) and not with OSATS (R = 0.1609, P = 0.4323). UCLR subscores indicated marking the repair had little correlation with training level (R = 0.2802, P = 0.1656), whereas performance and result did (R = 0.5152, P = 0.0071*, R = 0.4226, P = 0.0315*, respectively). Correlation between symmetry measures and training level was weak. Conclusions:. High-fidelity simulation paired with an appropriate procedure-specific assessment tool has the construct validity to evaluate performance for cleft lip repair. Simply being able to mark a cleft lip repair is not an accurate independent assessment method nor is symmetry of the final result

Sustainable Cleft Care Through Education: The First Simulation-Based Comprehensive Workshop in the Middle East and North Africa Region

Objective: To describe the conduct of the first multidisciplinary simulation-based workshop in the Middle East/North Africa region and evaluate participant satisfaction. Design: Cross-sectional survey-based evaluation. Setting: Educational comprehensive multidisciplinary simulation-based cleft care workshop. Participants: Total of 93 workshop participants from over 20 countries. Interventions: Three-day educational comprehensive multidisciplinary simulation-based cleft care workshop. Main Outcome Measures: Number of workshop participants, number of participants stratified by specialty, satisfaction with workshop, number of workshop staff, and number of workshop staff stratified by specialty. Results: The workshop included 93 participants from over 20 countries. The response rate was 47.3%, and participants reported high satisfaction with all aspects of the workshop. All participants reported they would recommend it to colleagues (100.0%) and participate again (100.0%). No significant difference was detected based on participant specialty or years of experience. The majority were unaware of other cleft practitioners in their countries (68.2%). Conclusion: Multidisciplinary simulation-based cleft care workshops are well received by cleft practitioners in developing countries, serve as a platform for intellectual exchange, and are only possible through strong collaborations. Advocates of international cleft surgery education should translate these successes from the regional to the global arena in order to contribute to sustainable cleft care through education

Sustainable cleft care through education : the first simulation-based comprehensive workshop in the Middle East and North Africa region

Objective: To describe the conduct of the first multidisciplinary simulation-based workshop in the Middle East/North Africa region and evaluate participant satisfaction. Design: Cross-sectional survey-based evaluation. Setting: Educational comprehensive multidisciplinary simulation-based cleft care workshop. Participants: Total of 93 workshop participants from over 20 countries. Interventions: Three-day educational comprehensive multidisciplinary simulation-based cleft care workshop. Main Outcome Measures: Number of workshop participants, number of participants stratified by specialty, satisfaction with workshop, number of workshop staff, and number of workshop staff stratified by specialty. Results: The workshop included 93 participants from over 20 countries. The response rate was 47.3%, and participants reported high satisfaction with all aspects of the workshop. All participants reported they would recommend it to colleagues (100.0%) and participate again (100.0%). No significant difference was detected based on participant specialty or years of experience. The majority were unaware of other cleft practitioners in their countries (68.2%). Conclusion: Multidisciplinary simulation-based cleft care workshops are well received by cleft practitioners in developing countries, serve as a platform for intellectual exchange, and are only possible through strong collaborations. Advocates of international cleft surgery education should translate these successes from the regional to the global arena in order to contribute to sustainable cleft care through education