title: Validation of the French versions of the Hirschsprung's disease and Anorectal malformations Quality of Life (HAQL) questionnaires for adolescents and adults.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: UMR 1246 INSERM SPHERE "methodS in Patient-centered outcomes & HEalth ResEarch", University of Nantes, Nantes, France. corine.baayen@univ-nantes.fr.|Plateforme de Biométrie, Département Promotion de la Recherche Clinique, University Hospital, Nantes, France. corine.baayen@univ-nantes.fr.
authors.forename: Corine
authors.identifier: http://orcid.org/0000-0002-0992-3026
authors.initials: C
authors.lastname: Baayen
authors.affiliation: 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.
authors.forename: Fanny
authors.initials: F
authors.lastname: Feuillet
authors.affiliation: Department of Pediatric surgery, Robert Debré Hospital, Paris, France.
authors.forename: Pauline
authors.initials: P
authors.lastname: Clermidi
authors.affiliation: 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.
authors.forename: Célia
authors.initials: C
authors.lastname: Crétolle
authors.affiliation: 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.
authors.forename: Sabine
authors.initials: S
authors.lastname: Sarnacki
authors.affiliation: National French Center of Expertise for Anorectal and Rare Pelvic Malformations, Paris, France.|Department of Pediatric Surgery, University Hospital, Angers, France.
authors.forename: Guillaume
authors.initials: G
authors.lastname: Podevin
authors.affiliation: UMR 1246 INSERM SPHERE "methodS in Patient-centered outcomes & HEalth ResEarch", University of Nantes, Nantes, France.
authors.forename: Jean-Benoit
authors.initials: JB
authors.lastname: Hardouin
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000071056:Anorectal Malformations / Q000523:psychology*; D005260:Female; D005602:France; D006627:Hirschsprung Disease / Q000523:psychology*; D006801:Humans; D008297:Male; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires / Q000592:standards*; D014175:Translating
keywords: Anorectal malformation; Cultural adaptation; Disease-specific questionnaire; HAQL; Hirschsprung’s disease; Krickenbeck; Quality of Life