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Humanistic burden of haemophilia A without inhibitors: A cross-sectional analysis of the HemoLIFE study

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Title: Humanistic burden of haemophilia A without inhibitors: A cross-sectional analysis of the HemoLIFE study
Authors: Quintana Paris, Laura, Entrena Ureña, Laura, Álvarez Román, María Teresa, Nuñez, Ramiro, Benítez Hidalgo, Olga, López Jaime, Francisco José
Contributors: Institut Català de la Salut, [Álvarez-Román MT] Unidad de Trombosis y Hemostasia, Hospital Universitario la Paz, Madrid, Spain. [Nuñez Vazquez RJ] Unidad de Hematología y Hemoterapia, Hospital Universitario Virgen del Rocío, Sevilla, Spain. [Benitez Hidalgo O] Servei d’Hematologia, Vall d’Hebron Hospital Universitari, Barcelona, Spain. [Quintana Paris L] Unidad de Hematología y Hemoterapia, Hospital Universitario de Gran Canaria Doctor Negrín, Las Palmas de Gran Canaria, Spain. [Entrena Ureña L] Servicio de Hematología y Hemoterapia, Hospital Universitario Virgen de las Nieves, Granada, Spain. [Lopez Jaime FJ] Servicio de Hematología y Hemoterapia, Hospital Regional Universitario de Málaga, Málaga, Spain, Vall d'Hebron Barcelona Hospital Campus
Source: Scientia
Publisher Information: Wiley, 2024.
Publication Year: 2024
Subject Terms: Hemofília, TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS::técnicas de investigación::métodos epidemiológicos::recopilación de datos::encuestas y cuestionarios, Ansietat, DISEASES::Hemic and Lymphatic Diseases::Hematologic Diseases::Blood Coagulation Disorders::Blood Coagulation Disorders, Inherited::Hemophilia A, PSIQUIATRÍA Y PSICOLOGÍA::conducta y mecanismos de la conducta::emociones::ansiedad, Pacients - Satisfacció, ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Investigative Techniques::Epidemiologic Methods::Data Collection::Surveys and Questionnaires, ENFERMEDADES::enfermedades hematológicas y linfáticas::enfermedades hematológicas::trastornos de la coagulación sanguínea::trastornos de la coagulación sanguínea hereditarios::hemofilia A, Qüestionaris, HEALTH CARE::Environment and Public Health::Public Health::Epidemiologic Measurements::Demography::Health Status::Quality of Life, ATENCIÓN DE SALUD::ambiente y salud pública::salud pública::medidas epidemiológicas::demografía::estado de salud::calidad de vida, PSYCHIATRY AND PSYCHOLOGY::Behavior and Behavior Mechanisms::Emotions::Anxiety
Description: Aim To evaluate the impact of haemophilia A without inhibitors on humanistic outcomes in patients and caregivers. Herein, we report a cross-sectional analysis of the baseline data of persons with haemophilia (PWH) participating in the prospective study HEMOLIFE. Methods These data are part of a prospective, observational, and multicentre study currently being conducted in 20 hospitals in Spain by haematologists. We included subjects 12 years or older diagnosed with haemophilia. The evaluations included the Maladjustment Scale, Haemophilia–Specific Quality of Life Questionnaire for Adults (HaemoQol)/HaemoQol Short Form (Children), haemophilia-specific version of the Work Productivity and Impairment Questionnaire plus the Classroom Impairment Questionnaire (WPAI+CIQ:HS), Haemophilia Activity List (HAL)/Paediatric Haemophilia Activities List (pedHAL), visual analogue scale (VAS) for evaluating pain, Coping Pain Questionnaire–Reduced (CAD-R), and Hospital Anxiety and Depression Scale (HADS). Results A total of 81 PWH were recruited at 18 centres; 66 PWH were ≥18 years (i.e., adults), and PWH 15 were
Haemophilia A; Productivity; Psychological impact
Hemofilia A; Productividad; Impacto psicológico
Hemofília A; Productivitat; Impacte psicològic
RocheFarmaS.A
Document Type: Bachelor thesis
File Description: application/pdf
Language: English
DOI: 10.1111/hae.15057
Access URL: https://hdl.handle.net/11351/11793
Rights: CC BY NC
Accession Number: edsair.od......3991..1ec6dfc4844e9f04321a848dbaa1102e
Database: OpenAIRE
Description
Abstract:Aim To evaluate the impact of haemophilia A without inhibitors on humanistic outcomes in patients and caregivers. Herein, we report a cross-sectional analysis of the baseline data of persons with haemophilia (PWH) participating in the prospective study HEMOLIFE. Methods These data are part of a prospective, observational, and multicentre study currently being conducted in 20 hospitals in Spain by haematologists. We included subjects 12 years or older diagnosed with haemophilia. The evaluations included the Maladjustment Scale, Haemophilia–Specific Quality of Life Questionnaire for Adults (HaemoQol)/HaemoQol Short Form (Children), haemophilia-specific version of the Work Productivity and Impairment Questionnaire plus the Classroom Impairment Questionnaire (WPAI+CIQ:HS), Haemophilia Activity List (HAL)/Paediatric Haemophilia Activities List (pedHAL), visual analogue scale (VAS) for evaluating pain, Coping Pain Questionnaire–Reduced (CAD-R), and Hospital Anxiety and Depression Scale (HADS). Results A total of 81 PWH were recruited at 18 centres; 66 PWH were ≥18 years (i.e., adults), and PWH 15 were<br />Haemophilia A; Productivity; Psychological impact<br />Hemofilia A; Productividad; Impacto psicológico<br />Hemofília A; Productivitat; Impacte psicològic<br />RocheFarmaS.A
DOI:10.1111/hae.15057