Validation of the French versions of the Hirschsprung’s disease and Anorectal malformations Quality of Life (HAQL) questionnaires for adolescents and adults

Health and Quality of Life Outcomes

Research

Pauline Clermidi¹  Guillaume Podevin²  Célia Crétolle³  Sabine Sarnacki³  Jean-Benoit Hardouin⁴  Fanny Feuillet⁵  Corine Baayen⁵ 

[1] Department of Pediatric surgery, Robert Debré Hospital, Paris, France;National French Center of Expertise for Anorectal and Rare Pelvic Malformations, Paris, France;Department of Pediatric Surgery, University Hospital, Angers, France;National French Center of Expertise for Anorectal and Rare Pelvic Malformations, Paris, France;Pediatric Surgery and Urology Department, AP-HP, Necker Hospital, Paris, France;University Paris Descartes, Sorbonne Paris Cite, Paris, France;UMR 1246 INSERM SPHERE “methodS in Patient-centered outcomes & HEalth ResEarch”, University of Nantes, Nantes, France;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;

关键词: Anorectal malformation;    Cultural adaptation;    Disease-specific questionnaire;    HAQL;    Hirschsprung’s disease;    Krickenbeck;    Quality of Life;   

DOI  :  10.1186/s12955-017-0599-7

 received in 2016-07-06, accepted in 2017-01-18,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundThe 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.MethodsThe 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.ResultsThe 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.ConclusionsA 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.

【 授权许可】

CC BY   
© The Author(s). 2017