Oral health outcomes: a systematic review of children’s involvement in orofacial cleft research

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Abstract Aims and objectives The aim of this study was to determine the extent of children's involvement in the contemporary orofacial cleft (OFC) literature regarding the description of oral health outcomes. Further objectives intended to assess the functional impact of orofacial cleft on oral health with regard to caries experience and to determine which measures of oral health-related quality of life have been used and their validity. Material and methods A systematic search of the OFC literature on oral health outcomes published between 2004 to 2019 was conducted through several electronic databases. Four calibrated reviewers independently evaluated the included papers. Manuscripts were assessed to ascertain the extent of children’s involvement and the methodological quality using a validated quality assessment tool. Results The search strategy generated 365 unique papers, and of these, only 60 articles met the inclusion criteria. Children were seen as active participants in only 6.6% of studies, and just 21.6% of studies engaged children to some degree. Proxy was used in 8.3% of studies whereas 63.3% of studies were categorised as being conducted ‘on children’. The pooled mean difference in caries experience between children with OFC and non-OFC controls in dmft and DMFT were 1.66 and 0.88, respectively. The quality of the included papers had a mean score of 23.68 out of 42 points (52.6%, SD=6.4). The inter-examiner agreement had a margin between ‘good’ and ‘excellent’ agreement throughout the review process, with an average of 87.1%. Conclusion The included papers investigated a wide range of aspects of oral health, which may affect children with OFC. Further consideration of how to involve children in OFC research would ensure their voice is heard and may result in improvements in service provision.