Abstract
Significant treatment variation exists in the Netherlands between teams treating patients with cleft lip, alveolus, and/or palate, resulting in a confusing and undesirable situation for patients, parents, and practitioners. Therefore, to optimize cleft care, clinical practice guidelines (CPGs) were developed. The aim of this report is to describe CPG development, share the main recommendations, and indicate knowledge gaps regarding cleft care. Together with patients and parents, a multidisciplinary working group of representatives from all relevant disciplines assisted by two experienced epidemiologists identified the topics to be addressed in the CPGs. Searching the Medline, Embase, and Cochrane Library databases identified 5157 articles, 60 of which remained after applying inclusion and exclusion criteria. We rated the quality of the evidence from moderate to very low. The working group formulated 71 recommendations regarding genetic testing, feeding, lip and palate closure, hearing, hypernasality, bone grafting, orthodontics, psychosocial guidance, dentistry, osteotomy versus distraction, and rhinoplasty. The final CPGs were obtained after review by all stakeholders and allow cleft teams to base their treatment on current knowledge. With high-quality evidence lacking, the need for additional high-quality studies has become apparent.
Highlights
Among the most common congenital abnormalities are clefts of the lip, alveolus, and palate
We found no comparative studies about the effectiveness of genetic testing for cleft lip and palate
clinical practice guidelines (CPGs) are a valuable source of information to quickly update healthcare providers’
Summary
Among the most common congenital abnormalities are clefts of the lip, alveolus, and palate. In the Netherlands, significant practice variation exists between cleft teams, and parents, patients, and healthcare professionals consider this to be confusing and undesirable. This became clear in 2009 during the process of developing clinical practice guidelines (CPGs) on counseling after detecting clefts prenatally [2,3]. It was judged to be beneficial to create evidence-based CPGs in order to realize more standardized postnatal cleft care throughout the Netherlands.
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