Translation and Validation of a Disease-specific Questionnaire for Hirschsprung's Disease in Danish Patients

University of Southern Denmark (SDU)

Status: Completed

Conditions: Hirschsprung Disease

Study type: Observational

Funder types: Other

Identifiers

NCT04730128

011-2018-NQ

Details and patient eligibility

About

The Hirschsprung and anorectal malformation quality of life (HAQL) questionnaire is a disease-specific quality of life questionnaire with 5 different elements (3 questionnaires for patients (categories: age 8-11, 12-16, and >17 years) and two questionnaires for parents of patients (categories: patients aged 8-11 and 12-16 years).

In the first part of this study, the questionnaires will be translated via forward-backward-translation, culturally adapted and evaluated for content validity.

In the second part of the study, the questionnaires will be validated in a cohort of all eligible Hirschsprung patients from Odense University Hospital from 1985-2014.

Enrollment: 173 patients

Sex: All

Ages: 8+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Diagnosed with Hirschsprung's Disease between the years 1985-2014
• Age > 7 years
• Good Danish comprehension
• Signed informed consent

Exclusion criteria

• Inability to follow the procedures of the study, e.g. due to language problems, severe psychological disorders, dementia, etc.