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| Name | Class |
|---|---|
| Odense University Hospital | OTHER |
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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.
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| Measure | Description | Time Frame |
|---|---|---|
| Internal Consistency (IC) assessed by Cronbach's Alpha | Day 1 |
| Measure | Description | Time Frame |
|---|---|---|
| Test-retest reliability assessed by intraclass-correlations coefficient | 4 weeks |
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Inclusion Criteria:
Exclusion Criteria:
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Based on the ICD-10 code for Hirschsprung's disease, all patients with Hirschsprung's disease diagnosed in Odense University Hospital will be offered to participate in the study. The diagnosis must be registered between the years 1985-2014 and the patient must be > 7 years at the study initiation.
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Odense University Hospital | Odense | Region Syddanmark | 5000 | Denmark |
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| ID | Term |
|---|---|
| D006627 | Hirschsprung Disease |
| ID | Term |
|---|---|
| D004065 | Digestive System Abnormalities |
| D004066 | Digestive System Diseases |
| D008531 | Megacolon |
| D003108 | Colonic Diseases |
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| D007410 |
| Intestinal Diseases |
| D005767 | Gastrointestinal Diseases |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |