Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate

Abstract

Background Psychological adjustment to cleft lip/palate is multifaceted and can fluctuate over time and across different situations. Consequently, a comprehensive understanding of adjustment is difficult to capture, and the challenge of achieving consensus among researchers and clinicians regarding key constructs and processes is considerable. Numerous measures have been used in research and clinical audit, resulting in conflicting findings and difficulties in evidencing the value of psychological intervention. The launch of the world's largest cleft lip/palate cohort study has provided an opportunity to standardize data collection across the United Kingdom. Objective To describe the collaborative process used to achieve consensus in the academic and clinical measurement of psychological adjustment to cleft lip/palate. Results Extensive work based on existing literature and clinical experience has resulted in a conceptual framework comprising six domains of adjustment and corresponding risk/protective factors that are measureable across key developmental time points. Driven by this framework, a core pack of standardized measures has been selected according to psychometric properties, clinical utility, and pragmatic considerations. Conclusions To date, these measures have been implemented within a UK-wide longitudinal cohort study (at diagnosis, 18 months, 3 years, 5 years, and 8 years) and adopted into the national routine clinical audit protocol for cleft lip/palate at age 5. Further data collection points will follow as the cohorts age. Over time, consistency in data collection will allow researchers to address some of the key unanswered questions in relation to psychological adjustment to cleft lip/palate.