{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,12]],"date-time":"2026-03-12T08:47:38Z","timestamp":1773305258645,"version":"3.50.1"},"reference-count":42,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2024,6,2]],"date-time":"2024-06-02T00:00:00Z","timestamp":1717286400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2024,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aim<\/jats:title><jats:p>To evaluate the impact of haemophilia A without inhibitors on humanistic outcomes in patients and caregivers. Herein, we report a cross\u2010sectional analysis of the baseline data of persons with haemophilia (PWH) participating in the prospective study HEMOLIFE.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>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\u2013Specific Quality of Life Questionnaire for Adults (HaemoQol)\/HaemoQol Short Form (Children), haemophilia\u2010specific 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\u2013Reduced (CAD\u2010R), and Hospital Anxiety and Depression Scale (HADS).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 81 PWH were recruited at 18 centres; 66 PWH were \u226518 years (i.e., adults), and PWH 15 were &lt;18\u00a0years (i.e., paediatric patients). Out of the 79 evaluable subjects, 16 (20%) showed an impact of haemophilia on daily life, and the areas most affected were \u201cleisure time\u201d (58% showed maladjustment) and \u201cwork\/studies\u201d (47% showed maladjustment). Patients reported a higher impact of haemophilia on quality of life (mean [SD] of the transformed score) in the dimensions of \u201csport\u201d (49.4 [28.6]), \u201cphysical health\u201d (40.5 [25.8]) and \u201cfuture\u201d (37.7 [28.9]). In adults, according to HAL scores, greater impairment of function was observed in \u201clying\/sitting\/kneeling\/standing,\u201d \u201cfunction of legs\u201d and \u201cleisure activities and sports,\u201d with mean normalized scores of 64.7, 65.1 and 69.0, respectively. Productivity was mostly impacted by presenteeism. The pain was infrequent and moderate. According to the HADS scores, nine (11.5%) patients had clinical anxiety and depression.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>PWH without inhibitors exhibited impairments in adjustment, quality of life and functionality, especially related to leisure and sports activities, and exhibit relevant levels of anxiety and depression.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.15057","type":"journal-article","created":{"date-parts":[[2024,6,3]],"date-time":"2024-06-03T04:39:29Z","timestamp":1717389569000},"page":"950-958","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Humanistic burden of haemophilia A without inhibitors: A cross\u2010sectional analysis of the HemoLIFE study"],"prefix":"10.1111","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3296-4288","authenticated-orcid":false,"given":"Mar\u00eda Teresa","family":"\u00c1lvarez\u2010Rom\u00e1n","sequence":"first","affiliation":[{"name":"Unidad de Trombosis y Hemostasia Hospital Universitario la Paz  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-6055-1037","authenticated-orcid":false,"given":"Ramiro Jose","family":"Nu\u00f1ez Vazquez","sequence":"additional","affiliation":[{"name":"Unidad de Hematolog\u00eda y Hemoterapia Hospital Universitario Virgen del Roc\u00edo  Sevilla Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Olga","family":"Benitez Hidalgo","sequence":"additional","affiliation":[{"name":"Servicio de Hematolog\u00eda Vall d'Hebron Barcelona Hospital Campus  Barcelona Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura","family":"Quintana Paris","sequence":"additional","affiliation":[{"name":"Unidad de Hematolog\u00eda y Hemoterapia Hospital Universitario de Gran Canaria Doctor Negr\u00edn  Las Palmas de Gran Canaria Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura","family":"Entrena Ure\u00f1a","sequence":"additional","affiliation":[{"name":"Servicio de Hematolog\u00eda y Hemoterapia Hospital Universitario Virgen de las Nieves  Granada Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Francisco Jose","family":"Lopez Jaime","sequence":"additional","affiliation":[{"name":"Servicio de Hematolog\u00eda y Hemoterapia Hospital Regional Universitario de M\u00e1laga  M\u00e1laga Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hortensia","family":"la De Corte\u2010Rodr\u00edguez","sequence":"additional","affiliation":[{"name":"Physical and Rehabilitation Medicine Department La Paz University Hospital  Madrid Spain"},{"name":"IdiPAZ Institute for Health Research  Madrid Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9731-2582","authenticated-orcid":false,"given":"Mar\u00eda","family":"Garc\u00eda Das\u00ed","sequence":"additional","affiliation":[{"name":"General Health Psychologist Freelance Independent Consultor  Valencia Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pau","family":"Bosch","sequence":"additional","affiliation":[{"name":"Unidad de Trombosis y Hemostasia Hospital Universitario y Polit\u00e9cnico de La Fe  Valencia Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9083-855X","authenticated-orcid":false,"given":"Mar\u00eda Eva","family":"Mingot Castellano","sequence":"additional","affiliation":[{"name":"Servicio de Hematolog\u00eda Hospital Universitario Virgen del Roc\u00edo Instituto de Biomedicina de Sevilla  Sevilla Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Itziar","family":"Guerra Garaeta","sequence":"additional","affiliation":[{"name":"Medical Expert Hemophilia &amp; Rare Blood Disorders Roche Farma S.A.  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