David Flores1, María P Ribate2, Marisol Montolio3, Feliciano J Ramos4, Manuel Gómez2, Cristina B García2. 1. Facultad de Ciencias de la Salud, Grado en Farmacia, Universidad San Jorge, Campus Universitario de Villanueva de Gállego Zaragoza, Autovía A-23 Zaragoza-Huesca Km. 299. 50.830 Villanueva de Gállego, Zaragoza, Spain. dflores@usj.es. 2. Facultad de Ciencias de la Salud, Grado en Farmacia, Universidad San Jorge, Campus Universitario de Villanueva de Gállego Zaragoza, Autovía A-23 Zaragoza-Huesca Km. 299. 50.830 Villanueva de Gállego, Zaragoza, Spain. 3. Scientific Director and Registry Curator, Duchenne Parent Project Spain, Adjunct Professor Department of Cell Biology, Physiology and Immunology, Faculty of Biology, Barcelona University, Avenida Diagonal, 643. 1st floor, Prevosti Building, 08028, Barcelona, Spain. 4. Unidad de Genética Clínica, Servicio de Pediatría, Hospital Clínico Universitario "Lozano Blesa"-CIBERER-GCV02, Departmento de Pediatría, Facultad de Medicina, Universidad de Zaragoza, Zaragoza, Spain.
Abstract
AIM: To establish the potential economic burden in caregivers to patients with DMD and the potential causative factors. METHOD: Caregivers to patients with DMD were recruited through the DMD patients Register and questioned about several economic aspects using "ad-hoc" questionnaires. RESULTS: All families, apart from one (97.2% n = 36), incurred in monthly medical costs (44% of the families more than 50 euros/month). 97.2% of the households considered looking after a patient of DMD as financially burdensome, and 80.5% of households declared to have suffered work changes, especially the mothers (job timetable-related mainly). The presence of obsessive-compulsive disorders (OCD) in patients was significantly associated with caregivers' high financial burden as these were six times more likely to have this perception OR = 6468 IC 95% (1056-39,601), p = 0.043. Also, when patients had learning difficulties, caregivers had up to six times more chances to incur in monthly expenditure for formal care OR = 6089 IC 95% (1112-33,342), p = 0.037. INTERPRETATION: Caregivers have relevant financial burden that might be conditioned by the clinical condition of the patient. WHAT THIS PAPER ADDS: Quantitative data about financial burden in DMD Spanish families providing informal care. Identification of the patient's main clinical issues associated with financial burden.
AIM: To establish the potential economic burden in caregivers to patients with DMD and the potential causative factors. METHOD: Caregivers to patients with DMD were recruited through the DMD patients Register and questioned about several economic aspects using "ad-hoc" questionnaires. RESULTS: All families, apart from one (97.2% n = 36), incurred in monthly medical costs (44% of the families more than 50 euros/month). 97.2% of the households considered looking after a patient of DMD as financially burdensome, and 80.5% of households declared to have suffered work changes, especially the mothers (job timetable-related mainly). The presence of obsessive-compulsive disorders (OCD) in patients was significantly associated with caregivers' high financial burden as these were six times more likely to have this perception OR = 6468 IC 95% (1056-39,601), p = 0.043. Also, when patients had learning difficulties, caregivers had up to six times more chances to incur in monthly expenditure for formal care OR = 6089 IC 95% (1112-33,342), p = 0.037. INTERPRETATION: Caregivers have relevant financial burden that might be conditioned by the clinical condition of the patient. WHAT THIS PAPER ADDS: Quantitative data about financial burden in DMD Spanish families providing informal care. Identification of the patient's main clinical issues associated with financial burden.
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