Resource Utilization Among Patients With Epidermolysis Bullosa: Preliminary Findings From Seven European Countries
Author(s)
Áron Hölgyesi, PharmD, PhD1, Renata Linertová, MSc2, Lidia García-Pérez, MSc2, László Gulácsi, MD, DSc1, Zsombor Zrubka, MD, MBA, PhD1, Marta Pentek, MD, DSc1.
1Health Economics Research Center, University Research and Innovation Center, Obuda University, Budapest, Hungary, 2Canary Islands Health Research Institute Foundation (FIISC), Las Palmas de Gran Canaria, Spain.
1Health Economics Research Center, University Research and Innovation Center, Obuda University, Budapest, Hungary, 2Canary Islands Health Research Institute Foundation (FIISC), Las Palmas de Gran Canaria, Spain.
OBJECTIVES: This study is part of the BUR-EB project, which aims to assess the social and economic consequences of epidermolysis bullosa (EB), a rare genetic skin disease, across seven European countries. The present analysis focuses on resource utilization among EB patients.
METHODS: A cross-sectional survey study was conducted in 2024 in Austria, Bulgaria, France, Germany, Hungary, Italy and Spain. EB patients were recruited without age restrictions by treating dermatologists and national patient organizations (DEBRA). In addition to socio-demographic characteristics, data was collected on healthcare (medicines, health materials, medical visits, medical examinations, hospitalization, healthcare transport) and non-healthcare (social services, professional carer, non-healthcare transport, informal care) resources used by patients due to their disease. Sample characteristics and resource utilization were assessed with descriptive methods while groups differences were analysed using the Chi-squared test. The study was supported by National Research, Development, and Innovation Fund of Hungary (project IDs: 2019-2.1.7-ERA-NET-2022-00055; EJP-RD-JTC-2021).
RESULTS: A total of 347 patients (53.3% female) participated in the study, including 206 adults (57.3% female) and 141 children (47.5% female). Overall, 99.1% of patients reported some level of resource use. Healthcare-related resource use was mainly driven by medical visits (91.9% of the sample), health materials (88.8%), medical examinations (77.8%) and medicines (70.0%). Regarding non-healthcare-related resources, non-healthcare transport was most commonly reported (72.6%), followed by informal care (37.8%) and social services (14.7%). When comparing resource use by age, we found that significantly more children reported use of informal care (51.1% vs 28.6%; p<0.001) and non-healthcare transport (82.3% vs 66.0%; p=0.001), while numerically more adults had medical examinations (73.0% vs 81.1%; p=0.077).
CONCLUSIONS: This preliminary analysis provides baseline information on EB patients’ resource use patterns, which appeared to be mainly dominated by healthcare-related needs and associated with patients’ age. Our results draw clinicians’ attention to patient needs and support healthcare professionals responsible for resource allocation decisions.
METHODS: A cross-sectional survey study was conducted in 2024 in Austria, Bulgaria, France, Germany, Hungary, Italy and Spain. EB patients were recruited without age restrictions by treating dermatologists and national patient organizations (DEBRA). In addition to socio-demographic characteristics, data was collected on healthcare (medicines, health materials, medical visits, medical examinations, hospitalization, healthcare transport) and non-healthcare (social services, professional carer, non-healthcare transport, informal care) resources used by patients due to their disease. Sample characteristics and resource utilization were assessed with descriptive methods while groups differences were analysed using the Chi-squared test. The study was supported by National Research, Development, and Innovation Fund of Hungary (project IDs: 2019-2.1.7-ERA-NET-2022-00055; EJP-RD-JTC-2021).
RESULTS: A total of 347 patients (53.3% female) participated in the study, including 206 adults (57.3% female) and 141 children (47.5% female). Overall, 99.1% of patients reported some level of resource use. Healthcare-related resource use was mainly driven by medical visits (91.9% of the sample), health materials (88.8%), medical examinations (77.8%) and medicines (70.0%). Regarding non-healthcare-related resources, non-healthcare transport was most commonly reported (72.6%), followed by informal care (37.8%) and social services (14.7%). When comparing resource use by age, we found that significantly more children reported use of informal care (51.1% vs 28.6%; p<0.001) and non-healthcare transport (82.3% vs 66.0%; p=0.001), while numerically more adults had medical examinations (73.0% vs 81.1%; p=0.077).
CONCLUSIONS: This preliminary analysis provides baseline information on EB patients’ resource use patterns, which appeared to be mainly dominated by healthcare-related needs and associated with patients’ age. Our results draw clinicians’ attention to patient needs and support healthcare professionals responsible for resource allocation decisions.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
EE650
Topic
Economic Evaluation
Topic Subcategory
Cost/Cost of Illness/Resource Use Studies
Disease
Rare & Orphan Diseases, Sensory System Disorders (Ear, Eye, Dental, Skin)