BACKGROUND: One of the most common congenital conditions in the world, cleft lip and/or palate (CL/P) has been shown to potentially impact long-term physical and developmental outcomes in affected children. However, little is known about the factors that contribute to such outcomes, and there is a lack of consensus about which screening tools may be most effective. The aims of the current study were (a) to assess parent-reported socioemotional and cognitive development in children born with CL/P at 18 months of age; (b) to identify factors associated with the incidence of developmental concerns; and (c) to assess the utility of the widely recommended Ages and Stages Questionnaires (ASQs) in identifying developmental concerns from an early age in the CL/P population.
METHODS: Parent-reported questionnaire data were extracted from The Cleft Collective Cohort Study for 322 mothers of children with CL/P aged 18 months.
RESULTS: Mean scores across both ASQ measures indicated typical development in the study sample overall. However, 31.1% of children met a referral criterion on at least one domain. Child-related risk factors included problems with physical development and feeding method. Parent-related risk factors included the mother's levels of anxiety and depression and mother's marital status. Additional developmental concerns extracted from mothers' qualitative data included feeding difficulties, speech development, sleep patterns, aggressive behaviours, vision, oral health, hearing, breathing and motor skills.
CONCLUSIONS: The majority of children in this study were developing as expected at 18 months of age. However, parent-reported developmental concerns were identified in a minority of children, suggesting a need to screen for potential risk factors in routine practice. Further, the ASQ appears to offer a viable option in the early identification of developmental concerns in children with CL/P. A combined medical and systemic approach to healthcare is recommended to support the prevention of long-term developmental concerns in the child and poor psychological adjustment in parents.
Bibliographical noteFunding Information:
This publication uses data derived from independent research funded by The Scar Free Foundation (REC approval 13/SW/0064). We are grateful to the families who participated in the study, the UK NHS cleft teams and The Cleft Collective team who helped to facilitate the study. Thank you to the Craniofacial Psychology Research Subgroup, the Cleft and Craniofacial Psychology Clinical Excellence Network and the Cleft Lip and Palate Association for their key role in the selection and design of the outcome measures used in this study. The views expressed in this publication are those of the author(s) and not necessarily those of The Scar Free Foundation or The Cleft Collective team. This research has been conducted using The Cleft Collective Resource under Application Number CC‐005.
This work was supported by The Scar Free Foundation (Registered Charity: 1078666) and by the Centre for Appearance Research at the University of the West of England, Bristol.
© 2020 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd