Chronic and rare disease patients' access to healthcare services during a health crisis: The example of the COVID‐19 pandemic in Turkey

Abstract

Objective 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. Methods 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. Results 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. Discussion 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. Public Contribution Representatives of patient organisations participated in the interviews.

Perceived access to general and mental healthcare in primary care in Colombia during COVID-19: A cross-sectional study

“…The challenges with access to general healthcare services, especially for non-COVID health conditions, have been described in multiple settings worldwide ( 3 , 7 , 22 ). Several factors have contributed to the quality and the quantity in healthcare access, including the diversion of resources toward the care of COVID patients, the prioritization of the health conditions deemed essential for healthcare provision, and the barriers to implementation of remote healthcare (such as by phone or online) ( 1 , 3 – 5 ). Healthcare provision changes required health providers and patients to adapt to quickly changing steps in the process of healthcare and a fast-learning curve in healthcare systems' use of communication technology such as smartphones, computer programs, remote calls, email, and others ( 5 ).…”

“…Although the emergencies rooms were available, patients dealt with the fear of COVID contagion in those sites. The intense public campaign for self-isolation and social distancing and the lack of clarity regarding the process changes implemented for healthcare provision left patients in the position of needing to decide whether they were candidates for healthcare (i.e., worthy of going to a hospital) and encumbering already crowded hospitals ( 1 , 2 , 6 , 7 , 9 ). This led to a number of patients refraining or postponing seeking any healthcare which, in some settings, has been correlated to avoidable mortality and poor outcomes for easily manageable health conditions ( 1 , 6 , 9 ).…”

“…The intense public campaign for self-isolation and social distancing and the lack of clarity regarding the process changes implemented for healthcare provision left patients in the position of needing to decide whether they were candidates for healthcare (i.e., worthy of going to a hospital) and encumbering already crowded hospitals ( 1 , 2 , 6 , 7 , 9 ). This led to a number of patients refraining or postponing seeking any healthcare which, in some settings, has been correlated to avoidable mortality and poor outcomes for easily manageable health conditions ( 1 , 6 , 9 ). Therefore, the high prevalence of perceived worsening in ease of access to healthcare during the pandemic reflects the struggle of both institutions and patients to maintain fluid communication regarding the steps to both mitigate the pandemic spread and address ongoing healthcare needs.…”

“…For example, even though the follow-up calls we implemented for symptoms assessment were not aimed as therapeutic interventions, our participants often expressed these were a space for relief and wellbeing, as they felt heard and cared for. Not only patients with diagnosed mental health conditions but also the entire base of clients from primary care will benefit from leveraging this regulatory framework and the benefits of technology to promote health and prevent disease through improved mental health ( 1 ). Fourth, we trained general practitioners based on a collaborative learning approach to provide mental health interventions depending on the severity of patients' symptoms.…”

“…They did so within government-imposed constraints to contain the pandemic spread, which included social distancing, lockdowns, and mobility restrictions. Some strategies used by healthcare institutions included implementing remote healthcare and the prioritization of services deemed as essential (1)(2)(3)(4). The implementation of these strategies required adaptation and an accelerated learning curve for all the actors within the systems, but especially for health providers and patients, who had to take part in navigating new processes for healthcare provision and access.…”