When There is more than a Cleft: Psychological Adjustment When a Cleft is Associated with an Additional Condition

Abstract

Background In spite of studies reporting a relatively high frequency of additional conditions in children with a cleft lip and/or cleft palate (CUP), almost no research has focused on this clinically important subgroup. The objective of this study was to compare psychosocial adjustment in children with CUP with and without an additional condition. Design Cross-sectional data based on routine psychological assessments at age 10 years, with comparisons to national reference groups. Setting Centralized treatment, Norway. Participants Two hundred five children with CUP (participation rate: 80.1%) from three consecutive birth cohorts. Outcome measures The Strengths and Difficulties Questionnaire (self-report and parent report) and the Child Experience Questionnaire (self-report). Results Eighty-one children (39.5%) were identified as having at least one condition in addition to the cleft. These children reported significantly more psychosocial difficulties than children with a cleft alone. Differences between specific conditions were minor. Children with a cleft alone (n = 124) reported mean scores that were comparable to those reported by the reference group. There were no differences in adjustment between children with a visible versus a non-visible cleft. Conclusions The present study highlights the need for research to be conducted in children with CUP who have additional conditions to provide better knowledge and clinical care for a potentially vulnerable subgroup of children and their parents.