title: Development of a new disease-specific quality-of-life questionnaire to adults living with haemophilia.
abstract: 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.
authors.affiliation: Servicio de Hematología y Hemoterapia, Hospital Universitario La Paz, Madrid, Spain.
authors.forename: P
authors.initials: P
authors.lastname: Arranz
authors.forename: E
authors.initials: E
authors.lastname: Remor
authors.forename: M
authors.initials: M
authors.lastname: Quintana
authors.forename: A
authors.initials: A
authors.lastname: Villar
authors.forename: J L
authors.initials: JL
authors.lastname: Díaz
authors.forename: M
authors.initials: M
authors.lastname: Moreno
authors.forename: J
authors.initials: J
authors.lastname: Monteagudo
authors.forename: A
authors.initials: A
authors.lastname: Ugarriza
authors.forename: I
authors.initials: I
authors.lastname: Soto
authors.forename: R
authors.initials: R
authors.lastname: Pérez
authors.forename: J
authors.initials: J
authors.lastname: Chacón
authors.forename: M
authors.initials: M
authors.lastname: García-Luaces
authors.forename: A
authors.initials: A
authors.lastname: Cid
authors.forename: I
authors.initials: I
authors.lastname: Balda
authors.forename: M F
authors.initials: MF
authors.lastname: López
authors.forename: M J
authors.initials: MJ
authors.lastname: Gutíerrez
authors.forename: E
authors.initials: E
authors.lastname: Martínez
authors.forename: C
authors.initials: C
authors.lastname: Marrero
authors.forename: M
authors.initials: M
authors.lastname: Prieto
authors.forename: C
authors.initials: C
authors.lastname: Sedano
authors.forename: R
authors.initials: R
authors.lastname: Vaca
authors.forename: C
authors.initials: C
authors.lastname: Altisent
authors.forename: F
authors.initials: F
authors.lastname: Hernández-Navarro
mesh_terms: D000293:Adolescent; D000328:Adult; D006467:Hemophilia A / Q000523:psychology*; D006801:Humans; D008875:Middle Aged; D010865:Pilot Projects; D011594:Psychometrics; D011788:Quality of Life; D011795:Surveys and Questionnaires / Q000592:standards*