B3761 - Prevalence and Factors Associated with Behavioral Difficulties in 5-year-old Children Born with Cleft Lip and/or Palate - 15/04/2021

B number: 
Principal applicant name: 
Evie Stergiakouli | MRC IEU, UoB
Sammy Berman
Title of project: 
Prevalence and Factors Associated with Behavioral Difficulties in 5-year-old Children Born with Cleft Lip and/or Palate
Proposal summary: 

Cleft lip and/or palate (CLP) or orofacial cleft is a group of congenital birth defects affecting 1 in 700 newborns annually [1]. Commonly associated with structural problems relating to feeding, hearing, speech, and tooth development, recent research shows that affected individuals may also be at an elevated risk for psychological, social, and behavioral challenges [1],[2]. While many studies have sought to investigate the psychosocial effects of CLP, a 2005 systematic review was inconclusive, citing a dearth of longitudinal research and a lack of consistency and uniformity between studies [3]. In 2017, a Cleft Care UK study of five-year old children with unilateral CLP (UCLP) found that children born with UCLP had higher levels of behavioral problems than the general population, but that these findings required replication [1]. Researchers also suggest that children born with CLP may experience heightened psychosocial challenges around the school transition, and that this is worthy of investigation [1]. All of the contributing research cites a sufficient lack of large, longitudinal studies, focused on the psychological development of children born with CLP, and that this research is critical to the development of appropriate interventions for this population [1],[3].
1. Waylen A, Mahmoud O, Wills AK, Sell D, Sandy JR, Ness AR. Centre-level variation
in behaviour and the predictors of behaviour in 5-year-old children with non-
syndromic unilateral cleft lip: The Cleft Care UK study. Part 5. Orthodontics &
Craniofacial Research. 2017;20(S2):40–7.
2. Cleft lip and palate [Internet]. nhs.uk. 2017 [cited 2019 Apr 2]. Available from:
3. Hunt O, Burden D, Hepper P, Johnston C. The psychosocial effects of cleft lip and
palate: a systematic review. Eur J Orthod. 2005 Jun;27(3):274–85.
4. Bjerke SM, Feragen KB, Bergvik S. Strengths and Difficulties Questionnaire
(SDQ): Informant Agreement Between Children Born With Cleft Lip and/or
Palate and Their Parents. Cleft Palate Craniofac J. 2018;55(2):204–12.

Impact of research: 
The results of this study will provide valuable information for better understanding the needs of the CLP population and can advance our understanding of a potentially unmet service need from a public health perspective.
Date proposal received: 
Tuesday, 13 April, 2021
Date proposal approved: 
Thursday, 15 April, 2021
Epidemiology, Congenital abnormalities