Jadhav U, Mukherjee K
Department of Medical, Social Service, Seth GS Medical College and KEM Hospital, Mumbai, Maharashtra, India.
Centre for Health Policy Planning and Management, School of Health Systems Studies, Tata Institute of Social Sciences, Mumbai, Maharashtra, India.
J Postgrad Med. 2018 Jul-Sep;64(3):138-144. doi: 10.4103/jpgm.JPGM_701_16.
In India, the low public health priority given to rare disorders such as hemophilia hinders their management and optimal care, leading to relatively poor health outcomes. This study aims to profile the multidimensional health status of patients with severe hemophilia A, and its association with the use of healthcare resources and the cost of care in Mumbai region of India.
A cross-sectional, single-center study was conducted during January-May 2011, among 160 patients diagnosed with severe hemophilia A in Mumbai region of India. Their health status was documented using the Hemophilia Utilization Group Study's validated instrument of Functional Health Status Measure (FHS) and a single item of Self-care Measure.
Of 160 patients, 55% (n = 88) scored on the lower side on the FHS, with an average score of 6.65 ± 2.85. The use of healthcare resources and cost of treatment were considerable for patients with a lower mean rank score on the FHS and a higher mean rank score on the self-care measure. The consumption of clotting factor concentrates (CFCs), number of visits to a health facility and incidence of inpatient episodes were significantly associated with a relatively low score on the FHS. Similarly, a higher cost of treatment, in terms of the cost of CFCs, direct cost, emergency room cost, and indirect cost, were significantly associated with a lower score on the FHS.
The health status of patients with severe hemophilia A is compromised and has a significant impact on the use of healthcare resources and the cost of treatment.
在印度,诸如血友病等罕见疾病在公共卫生方面的优先级较低,这阻碍了对其的管理和最佳护理,导致健康结果相对较差。本研究旨在剖析重度甲型血友病患者的多维度健康状况,及其与印度孟买地区医疗资源使用和护理成本的关联。
2011年1月至5月期间,在印度孟买地区对160名被诊断为重度甲型血友病的患者开展了一项横断面单中心研究。使用血友病利用组研究的经验证的功能健康状况测量(FHS)工具和一项自我护理测量项目记录他们的健康状况。
160名患者中,55%(n = 88)在FHS上得分较低,平均分为6.65 ± 2.85。对于FHS平均排名得分较低且自我护理测量平均排名得分较高的患者,医疗资源的使用和治疗成本相当可观。凝血因子浓缩剂(CFCs)的消耗量、前往医疗机构的次数和住院发作的发生率与FHS上相对较低的得分显著相关。同样,就CFCs成本、直接成本、急诊室成本和间接成本而言,较高的治疗成本与FHS上较低的得分显著相关。
重度甲型血友病患者的健康状况受到损害,对医疗资源的使用和治疗成本有重大影响。