Development of a new disease‐specific quality‐of‐life questionnaire to adults living with haemophilia
2004; Wiley; Volume: 10; Issue: 4 Linguagem: Inglês
10.1111/j.1365-2516.2004.00918.x
ISSN1365-2516
AutoresPilar Arranz, Eduardo Remor, Manuel Quintana, Ana Villar, José Luis Díaz Agea, M. Martínez Moreno, J. L. Monteagudo, A. Ugarriza, Inmaculada Soto, R.M. Álvarez Pérez, José Ignacio Chacón, M. García‐Luaces, Ana Rosa Cid, I. BALDA, M. Fernanda López, M. J. Gutíerrez, Elena Céspedes Martínez, Carmen Marrero, Mercedes Sotos‐Prieto, Carmen Sedano, Rafaela Vaca, Carmen Altisent, F. Hernández‐Navarro,
Tópico(s)Hemophilia Treatment and Research
ResumoA 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.
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