Healthcare experiences, challenges, and needs of long COVID patients in Austria

Since the emergence of SARS-CoV-2 in early 2020, COVID-19 has affected millions of people worldwide [1]. While most patients recover within weeks, others experience symptoms that persist for months, impairing quality of life and daily functioning [2,3]. The World Health Organization defines post COVID-19 condition as symptoms occurring three months from the onset of COVID-19, lasting at least two months, and not attributable to alternative diagnoses [4]. The National Institute for Health and Care Excellence (NICE) categorizes the condition chronologically into different phases: an acute phase (signs and symptoms up to four weeks), an ongoing symptomatic phase (between four and 12 weeks), and a post-COVID syndrome (more than 12 weeks). Signs and symptoms lasting more than four weeks can also be referred to as long COVID syndrome [5]. In the literature and in clinical practice, the terms “long COVID” and “post-COVID/post COVID-19 condition” are often used interchangeably. For consistency and in line with current patient-facing and international usage, the term “long COVID” is used throughout this manuscript.

In general, long COVID can be classified as a post-viral syndrome. Existing scientific research on the pathogenesis of it remains incomplete, as the syndrome presents with multifactorial symptoms that are not uniform across all patients. Clinical presentation includes fatigue, dyspnea, exhaustion, cognitive impairment, insomnia, cardiovascular, and psychiatric manifestations [6,7].

In Austria, national guidelines like the Austrian S1 guideline for post-viral syndromes [7] and the “Aktionsplan zu postakuten Infektionssyndromen” (PAIS) [8] define primary care/general physicians (GPs) as the first point of contact and multidisciplinary coordinators of long COVID cases. The severity of symptoms will determine whether to opt for watchful waiting, referral for further specialist consultation or immediate medical intervention. Further diagnostics should only be performed if complaints persist for over 12 weeks, or red flags are present (for instance, clouding of consciousness, syncope, arrhythmia, signs of congestion or cyanosis). Referral to specialized long COVID clinics is recommended for complex cases and those not improving after one year of long COVID. Despite these frameworks, patient organizations and preliminary reports indicate that diagnostic processes are often prolonged, care is fragmented, and access to specialized services limited [9,10]. Interdisciplinary specialized clinics dedicated to addressing long COVID are planned to be established in Austria; however, nationwide coverage is currently not available.

International studies from the UK and the US report similar challenges: inconsistent symptom recognition, lengthy waiting times, and poor coordination between care levels [11,12,13]. Qualitative data capturing the real-world experiences of Austrian patients remain scarce; however, this is needed as the topic of underprovision is frequently discussed by the public.

In general, it seems necessary to clarify responsibilities, provide every player with specific assignments, use resources wisely and strive for a smooth collaboration of all disciplines that ultimately benefits the patient [10].

The aim of this study was to explore healthcare pathways, barriers, and perceived needs among people living with long COVID in Lower Austria, focusing on how care is accessed, coordinated, and experienced.

An exploratory qualitative study was conducted with eleven adults residing in Lower Austria who reported symptoms persisting ≥4 months after a COVID-19 infection between July 2022 and July 2023. Inclusion criteria were: (1) self-reported persistent symptoms following a confirmed or suspected SARS-CoV-2 infection lasting at least four months; (2) age at infection between 18 and 99 years; and (3) main residency in Lower Austria. All genders were included. A formal long COVID diagnosis was not a prerequisite at study entry; however, by the time of the interview all participants had carried symptoms for at least three months and therefore met the WHO definition of post COVID-19 condition [4]. Children were excluded because pediatric care in Austria is organized through separate structures. The four-month threshold was chosen to ensure that participants could reflect on a settled, persistent illness trajectory rather than on acute or early post-acute symptoms, and to align recruitment with the WHO definition of post COVID-19 condition [4]. Participants were recruited from a rehabilitation center, a neurology department, and an online patient group. The neurology department distributed approximately 120 recruitment posters to eligible patients, and the online patient group (Long COVID Austria) disseminated the poster through its digital channels twice. Interested individuals were encouraged to contact the first author themselves. At the rehabilitation center, eligible individuals who had previously consented to be approached for research (about 50–60 patients) were contacted by the first author by telephone. In total, one interview resulted from the neurology department, two from the online patient group, and eight from the rehabilitation center. Recruitment was conducted between autumn 2023 and autumn 2024. Despite an initial target of twenty interviews, only eleven individuals meeting the inclusion criteria agreed to participate. The cognitive and physical burden of long COVID, as well as the limited number of recruitment channels, likely contributed to this. Data saturation was not formally assessed, the exploratory aim of the study was to describe the diversity of care pathways rather than to achieve thematic saturation, which is acknowledged as a limitation. Potential participants received written study information, and the informed consent was obtained before interviews. The semi-structured telephone interviews were conducted, audio-recorded, transcribed verbatim and pseudonymized by the first author (K.S.).

Inductive qualitative content analysis following Mayring was applied using MAXQDA 2024, Berlin, Germany [14]. Three main categories were defined a priori based on the interview guide: (1) participant characteristics; (2) symptom development and management; and (3) healthcare system experience. Subcategories emerged through iterative line-by-line coding. Coding and categorization were refined through repeated transcript review. Coding followed an essentially inductive logic within these three pre-defined category domains and can therefore be characterized as a hybrid approach. All interviews were coded by the first author (K.S.), and category development, coding decisions, and emerging interpretations were discussed repeatedly with the senior supervisor (S.R.) to minimize individual interpretive bias. As no second independent coder was available, no formal inter-coder agreement statistic was calculated; instead, credibility was supported through iterative team discussions and the use of verbatim quotes to illustrate each theme. MAXQDA was used both for coding and to support category organization and retrieval of coded segments. The AI-assisted summarization function of the beta version was used only to support the exploration of coded segments and was verified manually. A reporting checklist based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) was followed [15]. Researcher positionality: the first author (K.S.) was a medical student at Karl Landsteiner University and was not personally affected by long COVID; the second author (W.S.) is head of the consulted neurology department with clinical experience in post-viral syndromes; and the senior author (S.R.) is a general practitioner with research interests in long COVID care. The research team’s clinical and academic backgrounds inform an interpretive stance sympathetic to primary care, which was openly reflected upon during analysis.

The study was approved by the Ethics Committee of Karl Landsteiner University (protocol code No. 1028/2023, initial approval in September 2023, amendments approved in March and September 2024) and conducted in accordance with the Declaration of Helsinki [16]. Written informed consent, including permission to audio-record the interview and to use pseudonymized quotations, was obtained from all participants by postal return prior to the interview. Audio recordings and identifying information were stored on a password-protected, university-administered laptop accessible only to the first author and the senior supervisor. After transcription, personal identifiers (e.g., names, dates of birth) were replaced with participant codes, and audio files were deleted thereafter. All reported quotations are pseudonymized. Data handling complied with the EU General Data Protection Regulation (GDPR) and Austrian implementation legislation.

The research question addressed was: “What is the experience of patients who report to be suffering from post-acute sequelae after a COVID-19 infection regarding their care within the Austrian healthcare system?”

A total of 11 participants were interviewed. The median age was 41 years (range 27–58). All were employed at the time of infection; 82% had medium or high occupational exposure risk (Table 1). Two reported pre-existing chronic health conditions.

Two main categories focus on the development of symptoms/management and healthcare system experience. Qualitative analysis guided the further subdivision into ten categories and 19 subcategories. A total of 472 segments were allocated to the development of symptoms and management, with an emphasis on the medical history, the development of symptoms, the management of long COVID, the current health status and the diagnoses made. The healthcare system experience was divided into 442 coded segments and five categories: initial medical contact, medical points of care, experience with the healthcare system, evaluation of alternative approaches, and requests and recommendations. The categorization is outlined in Table 2, with quotations provided to support it.

This study indicates that the care experiences of individuals with long COVID in Austria frequently deviate from national guideline recommendations. While all participants initially sought care from their general practitioner, subsequent pathways were often fragmented, diagnostic work-up was at times delayed, and access to treatment proved inconsistent, shaped by geographic location, insurance status, and personal initiative. Rehabilitation services and supportive healthcare professionals emerged as key facilitators of care. Enhancing GP training and reinforcing their coordinating role, providing appropriate reimbursement for time-intensive consultations, and broadening access to specialized, interdisciplinary reference centers may help address current shortcomings and improve equity. Overall, more consistent implementation of existing guidelines appears necessary and likely to strengthen the quality of long COVID care.

The authors thank all participants who generously shared their experiences for this study, as well as the staff of the participating rehabilitation center, the neurology department, and the Long COVID Austria patient group for their support with recruitment. During the preparation of this study, the authors used DeepL, versions v3.5 (2023) to v26 (2026), (DeepL SE, Cologne, Germany) for language refinement, MAXQDA 2024 (VERBI Software GmbH, Berlin, Germany) assisted summarization feature to support the exploration of coded segments during qualitative analysis, and Claude Version 1.2581.0 (Anthropic, San Francisco, CA, USA) to improve the structure, grammar, and spelling of the manuscript. The authors have reviewed and edited the output and take full responsibility for the content of this publication. Open Access Funding by Karl Landsteiner University of Health Sciences, Krems, Austria.

The following abbreviations are used in this manuscript:

Conceptualization, K.S. and S.R.; methodology, K.S. and S.R.; validation, K.S.; investigation, K.S.; formal analysis, K.S.; writing—original draft preparation, K.S.; writing—review and editing, K.S., W.S. and S.R.; visualization, K.S. and S.R.; supervision, W.S. and S.R. All authors have read and agreed to the published version of the manuscript.

The study was conducted in accordance with the Declaration of Helsinki, and the protocol was approved by the Ethics Committee of Karl Landsteiner University of Health Sciences (protocol code 1028/2023 and date of approval: 20 September 2023).

Informed consent was obtained from all subjects involved in the study. Participants provided written informed consent prior to participation in the interview study.

The data presented in this study are available on request from the first author due to privacy and ethical restrictions (participant confidentiality).

The authors declare no conflicts of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results.

The APC was funded by Karl Landsteiner University of Health Sciences, Krems, Austria.