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| Name | Class |
|---|---|
| Hasan Kalyoncu University | OTHER |
| University of Gaziantep | OTHER |
| Acıbadem Adana Hospital | OTHER |
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The aim of this study is to investigate the Turkish validity and reliability of the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool version2.0. Patients aged 4-18 years with hemophilia a or b will be included in the study. The study was planned as a multicenter and it is aimed to reach 100 patients. The process included four steps: a linguistic adaptation, cognitive debriefing interviews with children and their parents, a validity assessment with the Pediatric Quality of Life Inventory (PedsQL) as a comparator, and a test retest reliability assessment.
Health-related quality of life assessment is considered an important outcome in the evaluation of children with hemophilia. The Canadian Haemophilia Outcomes-Kids' Life Assessment Tool version2.0 is a disease-specific health-related quality of life measurement tool for 4 to 18-year-old boys with haemophilia. The aim of this study is to ensure the use of CHO-KLAT in clinical studies in Turkey.
Methods: Patients aged 4-18 years with hemophilia a or b will be included in the study.The study will be carried out in Van, Gaziantep and Adana provinces in Turkey and and it is aimed to reach 100 patients with hemophilia. The process included four steps: a linguistic adaptation, cognitive debriefing interviews with children and their parents, a validity assessment with the Pediatric Quality of Life Inventory (PedsQL) as a comparator, and a test retest reliability assessment.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Hemophilia | Other | Evaluation of quality of life of children with hemophilia in Turkey |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Evaluation of health related quality of life | Other | Evaluation of health related quality of life of boys with hemophilia with the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool and the Pediatric Inventory of Quality of Life |
| Measure | Description | Time Frame |
|---|---|---|
| HRQoL questionnaire | Health related quality of life | 1-2 week |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Ayşe Merve M Tat, Asst.Prof | Contact | +905052431112 | amervetat@gmail.com | |
| Necati Muhammed Tat, Asst.Prof | Contact | +05075083347 | necatimuhammedtat@gmail.com |
| Name | Affiliation | Role |
|---|---|---|
| Ayse Merve Tat, Asst.Prof | Van Yuzuncu Yıl University Faculty of Health Sciences | Study Director |
| Tugba Badat Gonen, PhD | Hasan Kalyoncu University Faculty Of Health Sciences | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Adana Acibadem Hospital | Not yet recruiting | Adana | Turkey (Türkiye) |
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| ID | Term |
|---|---|
| D006467 | Hemophilia A |
| D002836 | Hemophilia B |
| ID | Term |
|---|---|
| D025861 | Blood Coagulation Disorders, Inherited |
| D001778 | Blood Coagulation Disorders |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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Validation and reliability study
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| Ahmet Fayik Oner, Prof MD | Van Yuzuncu Yıl University Faculty of Medicine | Study Chair |
| Gaziantep University | Recruiting | Gaziantep | Turkey (Türkiye) |
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| Hasan Kalyoncu University | Recruiting | Gaziantep | Turkey (Türkiye) |
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| Van Yuzuncu Yıl University | Recruiting | Van | 65100 | Turkey (Türkiye) |
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| D020147 | Coagulation Protein Disorders |
| D006474 | Hemorrhagic Disorders |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D040181 | Genetic Diseases, X-Linked |