PDF(Pubmed)
Abstract：
Myasthenia gravis (MG) is a chronic autoimmune disorder, which is characterized by fatigable muscle weakness with frequent ocular signs and/or generalized muscle fatigue, and occasionally associated with thymoma. MG patients and their families face a significant socio-economic burden. This population is often experiencing unemployment, unwilling job transfers and decreased income.
This study aimed to estimate the annual costs from a societal perspective in a triple dimension of direct health care costs, direct non-health care costs (formal and informal care) and labor productivity losses in MG patients from Bulgaria, as well as to identify the main clinical and demographical cost drivers.
A bottom-up, cross-sectional, cost-of-illness analysis of 54 adult MG patients was carried out in 2020. To collect data on demographic characteristics, health resource utilization, informal care and productivity losses, questionnaires were administered to and completed by patients.
Median annual costs of MG in Bulgaria were 4,047 EUR per patient. Direct costs slightly outweighed indirect costs, with drugs cost item having the biggest monetary impact. Despite the zero-inflated median, hospitalizations also influenced the direct costs by an estimated amount of 1,512 EUR in the 3rd quartile. Social services and professional caregiver costs were found to be almost missing, with the vast majority of patients reporting reliance on informal caregivers. Severe generalized disease, disease crises, and recurrent infections were confirmed as statistically significant cost driving factors. There were no severe generalized MG patients in the bottom quartile of the total costs distribution. It should be noted that in both cases of crises or infections, the overall increase in the total costs was mainly due to higher indirect costs observed. Reliance on family members as informal caregivers is routine among Bulgarian MG patients. This phenomenon is likely due to the lack of access to appropriate social services. Moreover, it is directly related with higher disease burden and significant inequalities. There is a need for further research on MG in Bulgaria in order to design targeted health policies that meet the needs and expectations of these patients.
This study aimed to estimate the annual costs from a societal perspective in a triple dimension of direct health care costs, direct non-health care costs (formal and informal care) and labor productivity losses in MG patients from Bulgaria, as well as to identify the main clinical and demographical cost drivers.
A bottom-up, cross-sectional, cost-of-illness analysis of 54 adult MG patients was carried out in 2020. To collect data on demographic characteristics, health resource utilization, informal care and productivity losses, questionnaires were administered to and completed by patients.
Median annual costs of MG in Bulgaria were 4,047 EUR per patient. Direct costs slightly outweighed indirect costs, with drugs cost item having the biggest monetary impact. Despite the zero-inflated median, hospitalizations also influenced the direct costs by an estimated amount of 1,512 EUR in the 3rd quartile. Social services and professional caregiver costs were found to be almost missing, with the vast majority of patients reporting reliance on informal caregivers. Severe generalized disease, disease crises, and recurrent infections were confirmed as statistically significant cost driving factors. There were no severe generalized MG patients in the bottom quartile of the total costs distribution. It should be noted that in both cases of crises or infections, the overall increase in the total costs was mainly due to higher indirect costs observed. Reliance on family members as informal caregivers is routine among Bulgarian MG patients. This phenomenon is likely due to the lack of access to appropriate social services. Moreover, it is directly related with higher disease burden and significant inequalities. There is a need for further research on MG in Bulgaria in order to design targeted health policies that meet the needs and expectations of these patients.
摘要：
重症肌无力（MG）是一种慢性自身免疫性疾病，其特征是易疲劳的肌肉无力，频繁的眼部症状和/或全身性肌肉疲劳，偶尔与胸腺瘤有关。MG患者及其家属面临着巨大的社会经济负担。这些人经常失业，不愿转岗和收入减少。
本研究旨在从社会角度，从直接医疗费用的三重维度来估计年度费用。来自保加利亚的MG患者的直接非医疗保健费用(正式和非正式护理)和劳动生产率损失，以及确定主要的临床和人口统计学成本驱动因素。
自下而上,横截面,2020年对54例成年MG患者进行了疾病成本分析。为了收集人口统计特征的数据，卫生资源利用,非正式护理和生产力损失，对患者进行问卷调查,并由患者完成.
保加利亚MG的年费用中位数为每名患者4047欧元。直接成本略大于间接成本，药品成本项目具有最大的货币影响。尽管中位数为零，住院也影响了直接成本，估计在第3四分位数为1,512欧元。社会服务和专业护理人员的费用几乎不见了，绝大多数患者报告依赖非正式护理人员。严重的全身性疾病，疾病危机,和复发感染被证实为具有统计学意义的成本驱动因素.在总成本分布的底部四分位数中没有严重的全身性MG患者。应当指出，在危机或感染的情况下，总成本的总体增长主要是由于观察到的间接成本增加。保加利亚MG患者通常依赖家庭成员作为非正式护理人员。这种现象可能是由于无法获得适当的社会服务。此外，它与更高的疾病负担和显著的不平等直接相关。有必要对保加利亚的MG进行进一步研究，以设计满足这些患者需求和期望的有针对性的卫生政策。
本研究旨在从社会角度，从直接医疗费用的三重维度来估计年度费用。来自保加利亚的MG患者的直接非医疗保健费用(正式和非正式护理)和劳动生产率损失，以及确定主要的临床和人口统计学成本驱动因素。
自下而上,横截面,2020年对54例成年MG患者进行了疾病成本分析。为了收集人口统计特征的数据，卫生资源利用,非正式护理和生产力损失，对患者进行问卷调查,并由患者完成.
保加利亚MG的年费用中位数为每名患者4047欧元。直接成本略大于间接成本，药品成本项目具有最大的货币影响。尽管中位数为零，住院也影响了直接成本，估计在第3四分位数为1,512欧元。社会服务和专业护理人员的费用几乎不见了，绝大多数患者报告依赖非正式护理人员。严重的全身性疾病，疾病危机,和复发感染被证实为具有统计学意义的成本驱动因素.在总成本分布的底部四分位数中没有严重的全身性MG患者。应当指出，在危机或感染的情况下，总成本的总体增长主要是由于观察到的间接成本增加。保加利亚MG患者通常依赖家庭成员作为非正式护理人员。这种现象可能是由于无法获得适当的社会服务。此外，它与更高的疾病负担和显著的不平等直接相关。有必要对保加利亚的MG进行进一步研究，以设计满足这些患者需求和期望的有针对性的卫生政策。
