Department of Politics, School of Social Sciences, The University of Manchester, Manchester, UK.
Health Expect. 2021 Oct;24(5):1812-1820. doi: 10.1111/hex.13321. Epub 2021 Jul 26.
The restructuring of healthcare provision for the coronavirus disease 2019 (COVID-19) pandemic caused disruptions in access for patients with chronic or rare diseases. This study explores the experiences of patients with chronic or rare diseases in access to healthcare services in Turkey during the COVID-19 pandemic.
Semi-structured interviews were conducted with representatives (n = 10) of patient organisations (n = 9) based in Istanbul. Thematic analysis with an inductive approach was conducted to analyse the responses obtained through the interviews.
The lack of clinical information at the beginning of the pandemic caused fear among patients with chronic or rare diseases. Patients experienced obstacles in access to healthcare services because of the overcrowding of hospitals with COVID-19 patients. Some treatment procedures were cancelled or postponed by physicians. Of these procedures, some were medically vital for those patients, leading to or exacerbating further health problems. The most positive measures that patients identified were where the Social Security Institution introduced regulations to facilitate access to prescribed medicine for chronic patients. Information exchange between the doctors and their patients was important to alleviate the uncertainty and reduce the anxiety among patients.
Access problems experienced by patients during the COVID-19 pandemic were a complex mix of factors including shortages and physical barriers, but also perceptions of barriers. The findings of this study show that patient organisations can provide insights on disease-specific experiences and problems that are very valuable to improve access to healthcare services to achieve the universal health coverage target. Hence, this study emphasises the inclusion of patient organisations in decision-making processes during times of health crises.
Representatives of patient organisations participated in the interviews.
由于 2019 年冠状病毒病（COVID-19）大流行期间医疗服务提供结构的调整，慢性或罕见疾病患者的就医机会受到了干扰。本研究探讨了 COVID-19 大流行期间土耳其慢性或罕见疾病患者获得医疗服务的经历。
对伊斯坦布尔的 9 个患者组织的代表（n=10）进行了半结构式访谈。采用归纳法的主题分析对访谈中获得的回答进行了分析。
大流行初期缺乏临床信息导致慢性或罕见疾病患者感到恐惧。由于 COVID-19 患者挤满了医院，患者在获得医疗服务方面遇到了障碍。一些治疗程序被医生取消或推迟。其中一些程序对这些患者来说是至关重要的，导致或加重了进一步的健康问题。患者认为最积极的措施是社会保障机构出台了方便慢性患者获得规定药物的规定。医生与患者之间的信息交流对于减轻患者的不确定性和焦虑感非常重要。
COVID-19 大流行期间患者经历的获得医疗服务的问题是多种因素的复杂组合，包括短缺和物理障碍，但也包括对障碍的看法。本研究的结果表明，患者组织可以提供有关特定疾病的经验和问题的见解，这对于改善医疗服务的可及性以实现全民健康覆盖目标非常有价值。因此，本研究强调在卫生危机期间让患者组织参与决策过程。
患者组织的代表参加了访谈。
