Development of a new disease-specific quality-of-life questionnaire to adults living with haemophilia
| Autor: | I Soto, M Prieto, Manuel Quintana, M F López, A. Villar, J L Díaz, A Cid, M García-Luaces, R. Pérez, A Ugarriza, C Altisent, J Monteagudo, Pilar Arranz, J Chacón, C Marrero, E Martínez, Eduardo Remor, Fernando Hernandez-Navarro, C Sedano, M.J. Gutiérrez, M. Moreno, Rocio Vaca, I Balda |
|---|---|
| Rok vydání: | 2004 |
| Předmět: |
Adult
medicine.medical_specialty Psychometrics Adolescent MEDLINE Pilot Projects Haemophilia Hemophilia A Social support Quality of life (healthcare) Surveys and Questionnaires Health care Medicine Humans Psychiatry Genetics (clinical) Reliability (statistics) business.industry Hematology General Medicine Middle Aged medicine.disease Mental health Quality of Life business Clinical psychology |
| Zdroj: | Haemophilia : the official journal of the World Federation of Hemophilia. 10(4) |
| ISSN: | 1351-8216 |
| Popis: | A haemophilia-specific health-related quality-of-life questionnaire (named 'Hemofilia-QoL') was developed to assess quality-of-life in adults with haemophilia, and was psychometrically tested. Seventy-three interviews with haemophilia patients and health care professionals were used to generate the items included in the questionnaire, and expert ratings on the items formulated were used to screen them for potential omission. This was followed by psychometric testing in a sample of 35 patients. Preliminary psychometric testing of the revised questionnaire version, which contains 10 domains (physical health, physical role, joint damage, pain, treatment satisfaction, emotional role, mental health, social support), showed acceptable reliability (alpha = 0.94 for the Hemofilia-QoL total score) and validity, and this will be examined in a subsequent study with a larger patient sample. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|