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http://hdl.handle.net/10553/124214
Título: | Health-Related Quality of Life in Patients Living with Wilson Disease in Spain: A Cross-Sectional Observational Study | Autores/as: | Mariño, Zoe Berenguer, Marina Peña Quintana, Luis Olveira, Antonio Miralpeix, Anna Sastre, Isabel Reyes Domínguez, Ana Isabel Castillo, Pilar García-Solà, Clàudia Bono, Ariadna Romero, Miriam Pérez-Sádaba, Francisco Javier Aceituno, Susana Anguera, Anna |
Clasificación UNESCO: | 32 Ciencias médicas 3205 Medicina interna 320503 Gastroenterología |
Palabras clave: | Adherence Emotional Status Health-Related Quality Of Life Real-World Evidence Wilson Disease |
Fecha de publicación: | 2023 | Publicación seriada: | Journal of Clinical Medicine | Resumen: | Wilson disease (WD) is a rare copper metabolism disorder caused by mutations in the ATP7B gene. It usually affects young individuals and can produce hepatic and/or neurological involvement, potentially affecting health-related quality of life (HRQoL). We assessed HRQoL in a cohort of Spanish patients with WD and evaluated disease impact on several domains of patients’ lives, treatment adherence, drug preference and satisfaction, and healthcare resource utilisation in a cross-sectional, retrospective, multicentric, observational study. A total of 102 patients were included: 81.4% presented isolated liver involvement (group H) and 18.6% presented neurological or mixed involvement (group EH). Up to 30% of patients reported a deteriorated emotional status with anxiety and depression, which was greater in the EH subgroup; the use of neuropsychiatric drugs was high. Over 70% of the patients were satisfied with their current treatment but complained about taking too many pills, stating they would consider switching to another more patient-friendly treatment if available. The Simplified Medication Adherence Questionnaire revealed only 22.5% of patients were fully adherent to therapy, suggesting that alternative therapies are needed. This real-world study, even though is highly enriched with hepatic patients and mild disease, shows that WD impacts patients’ HRQoL, especially in the emotional domain. | URI: | http://hdl.handle.net/10553/124214 | ISSN: | 2077-0383 | DOI: | 10.3390/jcm12144823 | Fuente: | Journal of Clinical Medicine[EISSN 2077-0383],v. 12 (14):4823, (Julio 2023) |
Colección: | Artículos |
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