Department of Social and Education Policy, University of Peloponnese, Corinth, Greece.
Health Policy Institute, Athens, Greece.
East Mediterr Health J. 2020 Dec 9;26(12):1482-1492. doi: 10.26719/emhj.20.118.
The prevalence and clinical burden of beta-thalassaemia in Greece is high. Little information is available on the unmet needs of patients with beta-thalassaemia and barriers to access to care.
This study investigated barriers that patients with transfusion-dependent beta-thalassaemia in Greece face when accessing care and the associations between socioeconomic factors and access to care.
A cross-sectional study was conducted between November 2018 and January 2019. The sample consisted of 116 beta-thalassaemia patient-members of two Panhellenic patient associations for people with thalassaemia. All respondents were transfusion-dependent. The survey customized and used the Patient Access Partnership 5As of access tool to measure participants' access to health care services (subscales: accessibility, adequacy, affordability, appropriateness and availability). Data on their socioeconomic characteristics were also recorded. The association between the total score of each subscale and patient characteristics was examined using the Mann-Whitney or Kruskal-Wallis tests.
Respondents considered inpatient services less adequate and appropriate, and outpatient services and laboratory tests less affordable. Outpatient services were also perceived as less available. Participants' income was statistically significantly associated with all the subscales except accessibility, and rural residence was significantly associated with all five subscales.
Barriers in access to health care among beta-thalassaemia patients receiving transfusions still persist, especially for those who live far from transfusion centres and have lower incomes. It is important to understand and map current unmet medical and social needs of beta-thalassaemia patients in Greece, in order to design and implement a targeted health policy that can measurably improve patients' lives.
希腊的β-地中海贫血患病率和临床负担很高。关于β-地中海贫血患者的未满足需求以及获得医疗服务的障碍，相关信息很少。
本研究旨在调查希腊依赖输血的β-地中海贫血患者在获得医疗服务时面临的障碍，以及社会经济因素与获得医疗服务之间的关系。
这是一项横断面研究，于 2018 年 11 月至 2019 年 1 月进行。样本由两个泛希腊地中海贫血患者协会的 116 名β-地中海贫血患者成员组成。所有受访者均依赖输血。调查采用了患者准入伙伴关系 5A 准入工具，用于衡量参与者获得医疗保健服务的情况（子量表：可及性、充分性、可负担性、适宜性和可及性），并记录了他们的社会经济特征数据。使用 Mann-Whitney 或 Kruskal-Wallis 检验，研究了每个子量表的总分与患者特征之间的关系。
受访者认为住院服务不够充分和适宜，门诊服务和实验室检查不够负担得起。门诊服务也被认为不太容易获得。参与者的收入与除可及性以外的所有子量表均有统计学显著相关性，而农村居住与所有五个子量表均有显著相关性。
接受输血的β-地中海贫血患者在获得医疗服务方面仍然存在障碍，尤其是那些居住在远离输血中心且收入较低的患者。了解和描绘希腊β-地中海贫血患者当前未满足的医疗和社会需求非常重要，以便制定和实施一项有针对性的卫生政策，能够显著改善患者的生活。
