Centre for Appearance Research, University of the West of England, Bristol, UK.
Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.
Cleft Palate Craniofac J. 2024 Sep;61(9):1470-1479. doi: 10.1177/10556656231176904. Epub 2023 May 29.
Craniofacial microsomia (CFM) is a broad clinical term used to describe a congenital condition most commonly involving the underdevelopment of the external ear, mandible, soft tissues, and facial nerve. Despite medical advances, understanding of the psychological health and healthcare experiences of individuals with CFM and their caregivers remains limited. This article describes a research program designed to address these knowledge gaps, and identify opportunities for psychosocial intervention and improved healthcare provision.
The Craniofacial microsomia: Accelerating Research and Education (CARE) research program aims to: Conduct up to 160 narrative interviews with individuals and caregivers to validate a conceptual framework; Administer an online international survey of up to 800 individuals with CFM and caregivers to identify predictors of psychological distress; Perform up to 60 semi-structured interviews with healthcare providers and advocacy leaders to examine the extent to which current healthcare provisions address identified patient needs; and Establish a participant registry to build a longitudinal database and develop an international community.
Teams in the USA and UK have been established, alongside an international, interdisciplinary Advisory Committee. Data analysis for Aim 1 is ongoing and informing the delivery of Aims 2-3. Aim 4 is also in development. A dedicated website serves as a recruitment tool, educational resource, and mechanism for engaging with the CFM community.
The CARE program provides a comprehensive approach to understanding the experiences of individuals with CFM and their caregivers. Challenges encountered and lessons learned are shared for the benefit of the community.
颅面小颌畸形（CFM）是一个广泛的临床术语，用于描述一种先天性疾病，最常见的是涉及外耳、下颌骨、软组织和面神经发育不良。尽管医学取得了进步，但对于 CFM 患者及其照顾者的心理健康和医疗保健体验的理解仍然有限。本文描述了一个旨在解决这些知识空白的研究计划，并确定了进行心理干预和改善医疗服务的机会。
颅面小颌畸形：加速研究和教育（CARE）研究计划旨在：对患者及其照顾者进行多达 160 次叙事访谈，以验证概念框架；对多达 800 名 CFM 患者及其照顾者进行在线国际调查，以确定心理困扰的预测因素；对医疗保健提供者和倡导领袖进行多达 60 次半结构化访谈，以检查当前医疗服务提供的程度是否满足确定的患者需求；并建立参与者登记处，以建立一个纵向数据库并发展一个国际社区。
在美国和英国设立了团队，同时还成立了一个国际跨学科咨询委员会。正在对目标 1 进行数据分析，这为目标 2-3 的实施提供了信息。目标 4 也在开发中。一个专门的网站充当了招募工具、教育资源和与 CFM 社区互动的机制。
CARE 计划为了解 CFM 患者及其照顾者的体验提供了一种全面的方法。分享了遇到的挑战和吸取的经验教训，以造福于社区。
