“There is no one who helps you with it”: experiences of people with long COVID regarding medical care, therapeutic measures, and barriers in the German healthcare system: results of a qualitative study with four focus groups

Abstract

Background Many people experience long-term symptoms such as fatigue, cognitive problems, or shortness of breath after an acute infection with COVID-19. This emerging syndrome, known as long COVID, is new and complex in many aspects. This study aims to collect the experiences of people with long COVID with ambulatory healthcare structures. Methods Four focus groups were conducted with a total of 23 adults with long COVID in June and July 2022. These discussions were audio-recorded, subsequently transcribed, and analyzed using the qualitative content analysis of Mayring and Kuckartz. Results Fourteen out of 19 participants who had a primary care encounter regarding their long COVID symptoms did not perceive it as helpful. Many respondents reported that their general practitioners did not take their long COVID symptoms seriously and did not refer them to specialists or made therapeutic recommendations. However, some participants reported that they were prescribed non-pharmaceutical therapies (e.g., group meetings supported by psychotherapists, occupational therapy, etc.) that improved their condition. 14 of 23 respondents perceived care barriers such as providers’ lack of awareness of long COVID, poor access to specialists, a lack of specialized care (e.g., long COVID clinics), or high bureaucratic hurdles for specific healthcare services. To improve medical care, participants suggested campaigns to raise awareness of long COVID among healthcare providers and the general population, increase research and government investments regarding the development of treatment structures for long COVID, expanding existing therapeutic services, and establishing one-stop shops for integrated specialist healthcare for people with long COVID. Conclusions Several implications for healthcare professionals and policymakers can be derived from this study: (1) general practitioners should take the symptoms of long COVID seriously, assume a care coordinating role, make referrals, and establish contact with long COVID clinics; (2) care planners should focus on developing interprofessional evidence-based care and treatment approaches for long COVID; (3) existing care structures such as long COVID outpatient clinics should be expanded. The overarching goal must be to develop consistent guidelines for long COVID diagnosis, care, and treatment. Trial registration The study is registered in the German register for clinical trials (DRKS00026007, first registration on 09/09/2021).

“The dream is that there’s one place you go”: a qualitative study of women’s experiences seeking care from Long COVID clinics in the USA

“…Overall, this study’s findings present a picture in which the potential for Long COVID clinics to fill a vital need has been hampered by challenges related to care coordination and quality of care. These findings are consistent with the limited prior work on experiences with Long COVID clinics, particularly regarding the difficulty of being seen at a clinic, frustrations with referrals, and a desire for concrete steps to improve symptoms [ 13 , 23 , 24 ]. The current findings show these key challenges remain 3 years after Long COVID clinics first emerged in 2020 [ 25 ].…”

“…Our findings highlight the importance of developing and implementing effective strategies for care coordination to provide more effective care to Long COVID patients. Across studies, Long COVID patients consistently voice the need for a multi-disciplinary and integrated approach to their care [ 21 , 22 , 24 , 45 ]. One-stop multidisciplinary clinics are critical to “avoid multiple referrals to different specialists,” which would otherwise be needed given the breadth of symptoms experienced by patients, often impacting multiple different organ systems [ 8 , 26 ].…”

“…Garg et al [ 23 ] administered a survey on perceptions at a single Long COVID clinic in the USA in 2021, finding that while most patients were satisfied and appreciated having their experiences validated, they reported long wait times and travel distances as well as scheduling and financial barriers to seeing clinic-referred specialists. German Long COVID patients have reported both a lack of clinics and bureaucratic barriers to being seeing by Long COVID clinics [ 24 ]. Clinic leads report that a lack of established treatment protocols and insufficient staffing present barriers to care [ 25 ].…”

Exploring the perceptions and experiences of community rehabilitation for Long COVID from the perspectives of Scottish general practitioners’ and people living with Long COVID: a qualitative study

“…We identified several systemic challenges for LC service delivery which related to access, siloed services, limited resources and a perceived lack of holistic care, causing frustration for both GPs and people with LC. Similar challenges have been reported in the international qualitative literature from the perspectives of people with LC [30][31][32] and healthcare professionals. 33 To our knowledge, this is the first study to focus on community rehabilitation in Scotland.…”

Improvement in quality of life and cognitive function in Post Covid Syndrome after online occupational therapy: results from a randomized controlled pilot study

“…PCS is a growing global health problem which has been estimated to affect up to 11% of patients after SARS-CoV-2 infection [3]. In spite of high patient numbers worldwide and strong clinical need, effective treatment strategies are pending [21, 22].…”