Establishing an International Interdisciplinary Research Network in Craniofacial Microsomia: The CARE Program.

IF 1.2 4区 医学 Q3 DENTISTRY, ORAL SURGERY & MEDICINE
Cleft Palate-Craniofacial Journal Pub Date : 2024-09-01 Epub Date: 2023-05-29 DOI:10.1177/10556656231176904
Nicola M Stock, Canice E Crerand, Alexis L Johns, Christy M McKinney, Maarten J Koudstaal, Amelia F Drake, Carrie L Heike
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引用次数: 0

Abstract

Objective: 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.

Design: The Craniofacial microsomia: Accelerating Research and Education (CARE) research program aims to: 1) Conduct up to 160 narrative interviews with individuals and caregivers to validate a conceptual framework; 2) Administer an online international survey of up to 800 individuals with CFM and caregivers to identify predictors of psychological distress; 3) 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 4) Establish a participant registry to build a longitudinal database and develop an international community.

Results: 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.

Conclusions: 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.

建立颅面显微外科国际跨学科研究网络:CARE计划。
目的:颅面微粒体(CFM)是一个广泛的临床术语,用于描述一种最常见的先天性疾病,包括外耳、下颌骨、软组织和面神经发育不全。尽管医学取得了进步,但对CFM患者及其护理人员的心理健康和医疗保健经历的了解仍然有限。本文描述了一项旨在解决这些知识差距的研究计划,并确定心理社会干预和改善医疗保健的机会。设计:颅面微粒体:加速研究与教育(CARE)研究计划旨在:1)对个人和护理人员进行多达160次叙述性访谈,以验证概念框架;2) 对多达800名CFM患者和护理人员进行在线国际调查,以确定心理困扰的预测因素;3) 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,以检查当前医疗保健条款在多大程度上满足了已确定的患者需求;以及4)建立一个参与者登记处,以建立一个纵向数据库并发展一个国际社会。结果:美国和英国的团队已经成立,同时成立了一个国际跨学科咨询委员会。目标1的数据分析正在进行中,并为目标2-3的实现提供信息。目标4也在制定中。一个专门的网站是一个招聘工具、教育资源和与CFM社区互动的机制。结论:CARE计划提供了一种全面的方法来了解CFM患者及其护理人员的经历。为了社区的利益,分享遇到的挑战和吸取的教训。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
2.70
自引率
36.40%
发文量
215
期刊介绍: The Cleft Palate-Craniofacial Journal (CPCJ) is the premiere peer-reviewed, interdisciplinary, international journal dedicated to current research on etiology, prevention, diagnosis, and treatment in all areas pertaining to craniofacial anomalies. CPCJ reports on basic science and clinical research aimed at better elucidating the pathogenesis, pathology, and optimal methods of treatment of cleft and craniofacial anomalies. The journal strives to foster communication and cooperation among professionals from all specialties.
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