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.


| INTRODUCTION
The coronavirus disease 2019 (COVID-19) pandemic has introduced challenges for all dimensions of healthcare systems, forcing countries to restructure the provision of services to meet urgent demands for preventing the spread of the virus and treating infected individuals.
Hospitals were transformed into pandemic-oriented hospitals, elective surgeries were cancelled, or postponed and face-to-face consultations were moved to virtual platforms. Many health systems experienced shortages of medical supplies, most importantly, intensive care unit (ICU) beds and ventilators, causing ethical dilemmas for health workers such as rationing of limited healthcare resources. 1,2 The shift in resources among healthcare systems has affected the delivery of clinical services to patients who did not have COVID-19. 3 It created disruptions in the continuum of care and delays in diagnosis procedures. Among patients who do not have COVID-19, those with chronic diseases and rare diseases are the most vulnerable because of their complex health conditions and routine need to access specialised medical services. 4,5 Besides, patients with rare diseases need regular, multidisciplinary consultations conducted by a board of specialists and complex treatment services.
Even during the regular functioning of healthcare systems, patients with rare diseases face significant challenges in access to healthcare services because of their complex healthcare situation, which requires multidisciplinary consultations, extensive screening and monitoring procedures and expensive treatments. 6 During the pandemic, World Health Organization (WHO) suggested that countries identify context-relevant essential services to prioritise for continuation, which includes the provision of medications, supplies and support from healthcare workers for the ongoing management of chronic diseases. 7,8 Identifying the issues that patients with chronic diseases might face, WHO listed some modifications to maintain essential services, which are better information provision to the patients about COVID-19 and their disease-specific conditions, raising awareness about telehealth or online services for regular monitoring or urgent care for acute exacerbations or deterioration, creation of self-management and monitoring plans of the disease, increasing home supplies of medication and stocks of monitoring devices and modification of routine consultations. 8 The problems that faced in response to the pandemic have been exacerbated by the neoliberal policies implemented in Western countries since the late 1970s. 9 Privatisation of welfare services, cuts in public healthcare spending and divergence from the public health centralised approach resulted in a reduced ability to respond effectively to the pandemic. 10 To respond to the pandemic's challenges, Navarro 9 suggests the provision of universal health coverage (UHC) alongside other publicly provided welfare services. The UHC, by definition, indicates an ideal that 'all people have access to the health services they need, when and where they need them, without financial hardship'. 11 However, this aspirational definition overlooks an unexpected crisis, such as the COVID-19 pandemic. The pandemic has introduced complex challenges to healthcare systems, interrupting citizens' access to healthcare services even in countries with UHC. These challenges give rise to the question of whether it is possible to ensure every citizen's access to healthcare services during an acute pandemic response considering the different needs and priorities coexisting within the same healthcare system under resource constraints.
The restructuring of healthcare services involves potential tradeoffs between ensuring access to healthcare services for every citizen and meeting the pandemic's requirements by shifting the provision of expensive and time-consuming resources such as ICUs. This study explores patient experiences during the COVID-19 pandemic in Turkey, with a focus on patients with chronic or rare diseases, considering their complex healthcare needs, which require specialist services. The findings derive from data collected through nine semistructured interviews conducted with 10 participants from patient organisations (POs) based in Istanbul. Drawing upon studies of the impact of the pandemic on patients with chronic or rare diseases, this article aims to contribute to the literature discussing the capacity of Turkey's healthcare system to meet the needs of citizens with complex healthcare needs as a country that provides UHC.

| LITERATURE REVIEW
Concerns about the access of patients without COVID-19 to healthcare services sparked a new corpus of research in medicine to explore the challenges faced by patients with chronic diseases. According to these studies, the pandemic caused obstacles in access to essential health services because of the shift of resource allocation to COVID-19 services, limits on access to essential and nonessential services and cancellation or postponement of elective surgeries. 5,[12][13][14][15][16] In a study conducted by Halley et al., 12 some patients and their relatives stated problems in access to essential medical supplies because of shortages. The inability to access their doctors not only worsened their health condition but also led to a sense of feeling neglected by healthcare providers. 12 These issues have negative impacts on patients' health status, 12,13 which is also recognised by healthcare professionals. 14 Considering their existing comorbidities, access problems might create life-threatening challenges for patients with chronic or rare diseases. Access problems not only affect patients in need of medical care but also those seeking a diagnosis or considering undergoing a diagnostic procedure for potential health problems. 12,15,17,18 Wingrove et al. 18 surveyed organisations under the World Hepatitis Alliance to explore the impacts of the pandemic on viral hepatitis services and people living with viral hepatitis across the world. The results reveal problems in access to testing and to medication because of the closure of testing facilities, and lack of adequate information to individuals living with viral hepatitis. Delays in diagnosis cause concerns among health professionals because of potential increases in mortality from delayed treatment. 19 Individuals with chronic and rare diseases already experience uncertainties about their health and future, which have been AKTAS | 1813 aggravated by the pandemic, such as the risk of contracting the infection, not being able to receive the needed care and lack of both adequate and conflicting information. 20 These uncertainties, combined with social isolation, created new mental health challenges or worsened existing ones, as demonstrated by previous research. 13,14,21,22 In an effort to deal with problems in delivering face-to-face consultations, healthcare providers in many countries adopted virtual healthcare provision, known as telemedicine. 14,23 However, patients and their relatives are concerned about telemedicine as the primary method to access healthcare since they believe that it is insufficient for managing rare diseases considering the patients' complex healthcare conditions, which require monitoring and therapeutic services that cannot be easily transferred to online platforms. 12 Additionally, virtualisation of the healthcare system exacerbates the risk of widening inequalities in access to healthcare, especially for individuals with worse health outcomes, considering the existing gaps in IT access between individuals with different levels of socioeconomic status. 24

| TURKISH HEALTHCARE SYSTEM AND ITS RESPONSE TO COVID-19
Turkey, as an upper-middle-income country, 25 introduced UHC in 2003 with a compulsory social health insurance scheme and equal benefit packages for all citizens. With a distinctive combination of universalism in financing and marketization in the provision, 26 Turkey incentivized private investment in the healthcare sector. In addition to public healthcare provision with flat-rate copayments, the Social Security Institution (SSI) purchases healthcare services from private providers with floating copayments for hospital visits. Hence, the Turkish healthcare system has a competitive internal market that includes both public and private providers. 27 Turkey reported the first COVID-19 case in the country on 11 March 2020, later than most European countries. The relatively late arrival of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) virus to Turkey provided the country with an opportunity to learn from other countries' experiences with preventive measures. Hence, immediately after the detection of the first case, Turkey adopted a pandemic-oriented approach to transforming the country's healthcare system. Several measures were introduced to prevent the spread of the virus such as isolations and quarantines if needed, country-wide contact tracing and routine follow-ups of all contacted patients by their GPs. During this period, Turkey's relative advantage in addressing the pandemic was the high number of intensive care beds (46 ICU beds per 100,000 individuals) 28 compared to other OECD countries. 29 The large-scale 'city hospitals' established with a public-private partnership model have been promoted by the government as the strength of Turkey's healthcare systems since all rooms in the city hospitals could be converted into ICUs. 30 To make the best of this leverage, the Ministry of Health (MoH) issued a circular on 20 March 2020, stating that 'all hospitals with at least two specialists from infectious diseases and clinical microbiology, pulmonary medicine or internal medicine, and level 3 intensive care beds qualify as pandemic hospitals'. 31 Accordingly, all public and private hospitals meeting these conditions started to treat COVID-19 patients. Additionally, all elective surgeries were cancelled as recommended by the MoH. To prevent the overload on physicians, repeat prescription reports were extended by the SSI and patients were able to receive their medications from pharmacies without seeing their doctors if a consultation was not necessary.
Despite the relatively high number of ICU beds in Turkey, Turkey's healthcare system is characterised by the relative scarcity of medical staff compared to other OECD countries, with 1.9 physicians and 2.3 nurses per 1000 individuals. 32 The scarcity of medical staff combined with the increasing workload during the pandemic raised concerns about the well-being of the medical staff and has been a point of weakness in Turkey's response to the COVID-19 pandemic. 33 The pandemic-oriented healthcare services approach raised concerns among doctors about the health conditions of chronic patients in Turkey. The Turkish Medical Association emphasised the risk of increased morbidity for chronic patients caused by delayed diagnosis and treatment. 34 Calling it a 'cancer pandemic', physicians pointed out the risk of an increasing number of late-diagnosed cancer patients. 35 They underscored the importance of early diagnosis and routine treatment procedures for better health outcomes. 35 Table 1 presents the characteristics of the participating POs and respondents.
The interview transcripts were analysed in Turkish using NVivo 12. The author conducted a thematic analysis to code the data following the process described by Braun and Clarke, 37 using an inductive approach, since the process was driven by data. The author familiarised herself with the interview transcripts, identified 'pattern responses' 37   (3, chronic disease, infectious, neither patient nor a patient relative).
As the quote above shows, some patients with chronic diseases were not able to consult their doctors, since the physicians were accepting patients with COVID-19. In some cases, they were not able to get an appointment for vital health problems because of the high number of patients with COVID-19 at hospitals: We have a group of patients whose respiratory muscles are paralyzed because of the ALS disease; these patients need to get a ventilator as soon as possible.
So, they must continue to live with respiration support. There are two types of it. Either they will have surgery, a hole will be created in their throat as you see on me, or they can get respiration support with a mask before this surgery. To get this, our patients (8A, rare disease, neurologic, patient).
Despite the widespread concern about the lack of hospitals isolated from COVID-19, some patients found services more accessible due to their age group: Because the majority of our group, especially the MPS group, are paediatric patients. In hospitals, as you know, paediatrics departments are cleaner than others, so we can say that they are luckier about that.

| Cancelled or postponed diagnosis and treatment
Overcrowding of hospitals with COVID-19 patients resulted in cancellation or postponement of some diagnosis and treatment procedures as stated by most of the respondents: It prevented early diagnosis. There were serious problems ranging from the disruption of some ongoing treatments to not taking or cutting some medications.
There are supervised injection services for spinal muscular atrophy (SMA) patients. They could not reach them as they turned into pandemic hospitals; they did not have the chance to obtain the medication in those centres.
The operations of our patients, whose colostomy bags were opened and whose intestines had to be taken back in, were postponed because it was not urgent.
As the above quotes demonstrate, some patients did not have the chance to access the essential treatments and surgeries because of cancelled treatment and surgeries. For instance, physiotherapy services play a role for patients with muscular diseases in reducing the progression of the disease and improving their health. Inability to access these services can reduce the well-being of the patients and has the potential to threaten their health status. 5,12

| Lack of clinical information, uncertainty and fear
The (1, rare disease, metabolic, patient relative).
Uncertainty and fear around the patients did not only disrupt their treatment but also aggravated their health problems because of the increasing anxiety. A respondent who is also a patient stated that attacks caused by their disease had become more frequent during the pandemic: Most of the patients had more attacks because of this uncertainty, their situation at home and their stress.
To illustrate the seriousness of the situation, the participant gave an example of their attacks: My attacks became more frequent. For example, I am having two attacks a week or every week.
Normally, I used to have my attacks every six months, every four or five months.
(4, rare disease, metabolic, patient). Narrating the experiences of patients with HIV, the above quote illustrates the potential of reliable scientific information to reduce the widespread anxiety and fear among patients.

| Facilitated access to prescribed medicine
To reduce the workload of physicians and shift the human resources to pandemic-oriented care, the SSI extended the period of repeat prescription reports, which enabled patients to receive their regular medications from pharmacies without seeing their doctors if it was not necessary. For all patient groups who participated in this study, this was seen as a positive development, (3, chronic disease, infectious, neither patient nor a patient relative).
The above quote shows that the virtual meetings arranged by physicians helped patients to obtain information about the pandemic and disease-specific issues. Those meetings were especially important considering the anxiety and fear caused by a lack of information. However, the information provided by the doctors was not enough at the beginning of the pandemic, since the doctors were also facing uncertainty: Researcher: Do you think that the information provided by the doctors was helpful to overcome the uncertainty during the pandemic?
Participant: Of course it wasn't since they were also in this uncertainty. So, there wasn't a clear picture neither for the patients nor the doctors, but they did their best to take action not to harm their patients.
The above quote shows that physicians also faced difficulties in providing accurate information to their patients. However, under the guidance of their medical expertise, they provided the best available information to their patients to reduce their uncertainties and fear.