Baayen Corine, Feuillet Fanny, Clermidi Pauline, Crétolle Célia, Sarnacki Sabine, Podevin Guillaume, Hardouin Jean-Benoit
UMR 1246 INSERM SPHERE "methodS in Patient-centered outcomes & HEalth ResEarch", University of Nantes, Nantes, France.
Plateforme de Biométrie, Département Promotion de la Recherche Clinique, University Hospital, Nantes, France.
Health Qual Life Outcomes. 2017 Jan 28;15(1):24. doi: 10.1186/s12955-017-0599-7.
The Hirschsprung's disease Anorectal malformation QoL questionnaire (HAQL) is a disease-specific quality of life (QoL) questionnaire for patients with Hirschsprung's disease (HD) or anorectal malformations (ARM). It was originally proposed in Dutch and is currently being translated into other languages to obtain an internationally standardized instrument. In this work we validate a French adaptation of the HAQL for adolescents and adults.
The questionnaires were translated into French and sent to patients aged 12 years and older, followed for HD or ARM at three French university hospitals. Questionnaires were sent to 147 adolescents and 188 adults. The psychometric properties of the questionnaires were analyzed in terms of reliability and validity.
The original HAQL structure was not satisfactory. A new structure was proposed, while aiming to remain close to the original structure. The proposed structure has acceptable reliability and validity properties and reflects both physical, as well as psychosocial aspects.
A French version of the HAQL questionnaire for adults and adolescents is ready for use in France. In particular the score could discriminate between degrees of clinical status based on the Krickenbeck consensus, which can aid clinicians to inform patients about physical and psychosocial challenges they may expect.
先天性巨结肠症肛门直肠畸形生活质量问卷（HAQL）是一种针对先天性巨结肠症（HD）或肛门直肠畸形（ARM）患者的特定疾病生活质量（QoL）问卷。它最初以荷兰语提出，目前正在翻译成其他语言以获得国际标准化工具。在这项工作中，我们验证了针对青少年和成人的HAQL法语改编版。
问卷被翻译成法语并发送给12岁及以上、在三家法国大学医院接受HD或ARM治疗的患者。问卷被发送给147名青少年和188名成人。从信度和效度方面分析问卷的心理测量特性。
原始的HAQL结构不尽人意。提出了一种新结构，同时力求与原始结构保持接近。所提出的结构具有可接受的信度和效度特性，并且反映了身体以及心理社会方面。
成人和青少年HAQL问卷的法语版本已准备好在法国使用。特别是该评分可以根据克里肯贝克共识区分临床状态的程度，这可以帮助临床医生告知患者他们可能面临的身体和心理社会挑战。
