Cleft Lip and Palate Association, London, United Kingdom.
National Cleft Surgical Service for Scotland, 473300Queen Elizabeth University Hospital, Glasgow, United Kingdom.
Cleft Palate Craniofac J. 2021 Jul;58(7):864-871. doi: 10.1177/1055665620968342. Epub 2020 Nov 3.
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.
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.
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.
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.
唇腭裂（CL/P）患者可能对其美学和/或功能结果不满意，并表示希望进一步治疗。尽管医疗干预可以提高生活质量，但手术需要复杂的决策，并可能引起心理困扰。本研究旨在通过检查一组出生时患有 CL/P 的成年人的自我报告治疗经历，更好地了解他们正在进行的治疗相关支持需求。
克利夫兰唇腭裂协会与西英格兰大学外观研究中心合作设计了一项在线混合方法调查。共收到 207 份符合条件的回复。定性数据采用归纳内容分析法进行分析，定量数据采用描述性统计进行分析。
尽管参与者对手术和牙齿/正畸结果总体上感到满意，但许多人报告仍存在持续的困难。一些人表示他们会寻求进一步的治疗，而另一些人则对风险和收益感到矛盾。一些人拒绝了治疗，理由是治疗疲劳、焦虑和/或担心治疗不成功。超过 40%的参与者不知道自己有权获得国民保健制度提供的与唇裂相关的治疗，许多人在获得护理方面也遇到了困难。
尽管医疗保健的进步可能为成年人提供改善生活质量的机会，但在可能的情况下，应在临床心理学家的支持下权衡治疗决策。还建议为考虑未来治疗的年轻成年人提供指导。最后，为当地从业者提供培训和资源可能会提高对 CL/P 服务的普遍认识，并增加对有持续 CL/P 相关问题的成年人的专业护理的获取。
