Corrêa Ana Paula Carvalho, Ribeiro Carla Trevisan Martins, Horovitz Dafne Dain Gandelman, Ribeiro Luciana Castaneda
Instituto Fernandes Figueira, Fundação Oswaldo Cruz - IFF/Fiocruz, Rio de Janeiro (RJ), Brasil.
Instituto Federal do Rio de Janeiro - IFRJ, Rio de Janeiro (RJ), Brasil.
Codas. 2020 Nov 13;32(6):e20190158. doi: 10.1590/2317-1782/20202019158. eCollection 2020.
The aim of this study was to identify the most typical and relevant categories of the International Classification of Functioning, Disability and Health (ICF) for patients with 22q11.2 Deletion Syndrome.
Based on the Delphi technique an expert survey through e-mail was performed among health professionals' specialists in the 22q11.2DS. Data were collected in 2 rounds. Answers were analysed for the degree of consensus.
7 Experts recruited through e-mail distribution lists of professional organizations and personal networks participated in the study. Categories in all ICF components that were considered typical and/or relevant by at least 80% of the responders were added to a pilot ICF instrument for children with 22q11.2DS, with a total of 145 ICF categories.
a list of ICF categories that are considered relevant and typical for 22q11.2DS condition by international experts was created. This is an important step towards identifying ICF Core Sets for chronic paediatric conditions in Brazil.
本研究旨在确定国际功能、残疾和健康分类（ICF）中与22q11.2缺失综合征患者最相关且最具代表性的类别。
基于德尔菲技术，通过电子邮件对22q11.2DS领域的健康专业专家进行了一项调查。数据分两轮收集。对答案进行了共识程度分析。
通过专业组织的电子邮件分发列表和个人网络招募的7名专家参与了该研究。至少80%的受访者认为所有ICF组成部分中具有代表性和/或相关性的类别被纳入了针对22q11.2DS儿童的ICF试点工具，共计145个ICF类别。
创建了一份被国际专家认为与22q11.2DS病情相关且具有代表性的ICF类别清单。这是在巴西确定慢性儿科疾病ICF核心集的重要一步。
