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

Translation and Validation of the Hirschsprung and Anorectal Malformation Quality of Life (HAQL) Questionnaire in a Danish Hirschsprung Population

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT04730128

Enrollment

173

Registered

2021-01-29

Start date

2020-07-01

Completion date

2021-05-15

Last updated

2022-11-09

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Hirschsprung Disease

Keywords

Hirschsprung Disease, Quality of Life, Translation and validation

Brief summary

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

CROSS_SECTIONAL

Eligibility

Sex/Gender

ALL

Age

8 Years to No maximum

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.

Design outcomes

Primary

Measure	Time frame
Internal Consistency (IC) assessed by Cronbach's Alpha	Day 1

Secondary

Measure	Time frame
Test-retest reliability assessed by intraclass-correlations coefficient	4 weeks

Countries

Denmark

Outcome results