Hemophilia A, Hemophilia B
Conditions
Keywords
Hemophilia, Health Related Quality of life
Brief summary
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.
Detailed description
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.
Interventions
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
Sponsors
Hasan Kalyoncu University
University of Gaziantep
Acıbadem Adana Hospital
Yuzuncu Yil University
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
DIAGNOSTIC
Masking
NONE
Intervention model description
Validation and reliability study
Eligibility
Sex/Gender
MALE
Age
4 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
* have Hemophilia A or B
Exclusion criteria
* Did not have significant cognitive impairment
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| HRQoL questionnaire | 1-2 week | Health related quality of life |
Countries
Turkey (Türkiye)
Contacts
Primary ContactAyşe Merve M Tat, Asst.Prof
Backup ContactNecati Muhammed Tat, Asst.Prof
Outcome results
None listed