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

University of Southern Denmark173 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

173

Conditions

Hirschsprung Disease

Eligibility

Sex: ALLMin age: 8 Years

Medical Language ↔ Plain English

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.

Locations (1)

Odense University Hospital

Odense, Region Syddanmark, Denmark

Outcomes

Primary Outcomes

Internal Consistency (IC) assessed by Cronbach's Alpha

Time frame: Day 1

Secondary Outcomes

Test-retest reliability assessed by intraclass-correlations coefficient

Time frame: 4 weeks