Objectives: Adults with cleft lip and/or palate (CL/P) may report dissatisfaction with aesthetic and/or functional outcomes and express desire for further treatment. Although medical intervention can improve quality of life, surgical procedures require complex decision-making and can invoke psychological distress. The aim of this study was to gain a better understanding of ongoing treatment-related support needs by examining self-reported treatment experiences of a sample of adults born with CL/P. Design: An online, mixed-methods survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research at the University of the West of England. A total of 207 eligible responses were received. Qualitative data were analyzed using inductive content analysis, while quantitative data were analyzed using descriptive statistics. Results: Although participants were satisfied with surgical and dental/orthodontic outcomes overall, many reported ongoing difficulties. Some stated they would seek further treatment while others felt conflicted about risks and benefits. Some had refused treatment, citing treatment fatigue, anxiety, and/or concerns that treatment would be unsuccessful. More than 40% of participants were unaware of their entitlement to cleft-related treatment provided by the National Health Service, and many others had experienced difficulties accessing care. Conclusions: Although advances in health care may offer opportunities for adults to improve their quality of life, treatment decisions should be weighed with the support of a clinical psychologist where available. Guidance for young adults considering future treatment is also recommended. Finally, training and resources for local practitioners may improve general awareness of CL/P services and increase access to specialist care for adults with ongoing CL/P-related concerns.
Cleft lip and/or palate includes a spectrum of congenital disorders affecting union on the lip, alveolus, hard and/or soft palate. The management of children born with an orofacial cleft requires a complex process from a multidisciplinary team (MDT) to restore form and function. Since the Clinical Standards Advisory Group (CSAG) report in 1998, the UK has reformed and restructured cleft services to improve the outcomes for children born with a cleft.The spectrum of cleft conditions, the members of the MDT and a chronological description of the stages of cleft management from diagnosis to adulthood are described using a clinical example. This paper forms the introduction to a series of more detailed papers which span all major aspects of cleft management. The papers will cover the following topics: dental anomalies; associated medical conditions among children; orthodontic management of patients; speech assessment and intervention; role of the clinical psychologist; challenges for the paediatric dentist; genetics and orofacial clefts; surgery - primary and secondary; restorative dentistry; and global perspectives.
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