Prevalence and Factors Associated with Behavioural Problems in 5-year-old Children Born with Cleft Lip and/or Palate from the Cleft Collective

Abstract: Objectives: We determined the prevalence of behavioural problems in 5-year-old children born with Cleft Lip and/or Palate (CL/P) and compared it to the prevalence in general population samples. We also identified risk factors for behavioural problems in children with CL/P. Design: Observational study using questionnaire data from the Cleft Collective (CC) 5-Year-Old cohort study and three general population samples. Main Outcome Measure: The Strengths and Difficulties Questionnaire (SDQ) was used to measure behavioural problems. Participants: A total of 340 children born with CL/P whose mothers had completed the SDQ when their child was 5 years old. Published estimates from three large cohorts were used to approximate general population SDQ scores in the UK and these were used as comparison groups; Millennium Cohort Study (MCS) (n=12,511), Office of National Statistics (ONS) normative school-age SDQ data (n=5,855) and the Avon Longitudinal Study of Parents and Children (ALSPAC) (n=9,386). Results: An estimated 14.3% of 5-year-old children born with CL/P experienced behavioural problems. There was strong evidence to suggest children with CL/P were more likely to experience difficulties than children in the general population, as measured by SDQ total difficulties scores from all three population cohorts: MCS (OR = 2.07 [95% CI = 1.50-2.85]; P<.001), ONS Norms (OR = 1.53 [95% CI = 1.12-2.11]; P=.008), and ALSPAC (OR = 2.37 [95% CI = 1.72-3.27]; P<.001). The odds of hyperactivity, emotional, prosocial and peer problems were increased among children in the Cleft Collective compared with children in the Millennium Cohort Study. Odds ratios and 95% confidence intervals indicated that children in the Cleft Collective were nearly twice as likely as those in the MCS (OR = 1.91 [95% CI = 1.38-2.65]; P<.001) and three times those in ALSPAC (OR = 3.20 [95% CI = 2.29-4.47]; P<.001) to experience emotional difficulties. The odds of emotional difficulties were higher in boys than girls. Maternal smoking, marital status, younger maternal age at conception, lower maternal education, receiving income support, and measures of poor maternal and familial health showed some evidence of association with behavioural problems in 5-year-old children born with CL/P. Conclusions: Our findings suggest elevated levels of behavioural problems in children born with CL/P, particularly emotional difficulties in boys, compared to the general population and indicate several factors associated observationally with these difficulties.