Abstract
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. Parent-reported questionnaire data were extracted from The Cleft Collective Cohort Study for 322 mothers of children with CL/P aged 18 months. 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. 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.
Highlights
One of the most common congenital conditions in the world, cleft lip and/or palate (CL/P) affects 1 in every 1,000 live births (World Health Organization, 2018)
The potential correlates of Ages and Stages Questionnaire-3 (ASQ-3) and Ages and Stages Questionnaire (ASQ-SE) under consideration are categorical; they are predominantly nominal data or ordered categorical data
Findings from the present study suggest that single-parent families may require more support in coping with the additional challenges of having a child with CL/P, in order to enrich the child's development as well as parental well-being
Summary
One of the most common congenital conditions in the world, cleft lip and/or palate (CL/P) affects 1 in every 1,000 live births (World Health Organization, 2018). Families of children with CL/P are expected to engage with a long-term multidisciplinary treatment pathway to address the functional and appearance-related consequences of the condition This may include psychological support, speech and language therapy, and orthodontics, among other treatments (National Health Service [NHS] England, 2013). It is possible that rather than the cleft itself, early parent–child interactions and familial characteristics are key influences for later developmental concerns (Hunt et al, 2007; Murray et al, 2010). The Ages and Stages Questionnaires (ASQs) are widely used in early educational and healthcare settings more broadly and are endorsed by the UK government (Ofsted & NHS Digital, 2017) These brief, parent-reported measures may be useful in early identification of developmental concerns in CL/P. The aims of the present study were to (a) assess parent-reported socioemotional and cognitive development in children born with CL/P at 18 months of age in comparison with the general population; (b) identify potential contributory factors for such developmental concerns; and (c) assess the utility of the ASQ in identifying early developmental concerns in the CL/P population
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