Tag: long covid healthcare

An insight into the long/post COVID care situation in Germany-a rapid scoping review

Abstract:

in English, German

Background: Long/post COVID and related conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome and post-vaccination syndrome are associated with persistent functional impairments and are met with care structures in Germany that are difficult to navigate.

Objective: The rapid scoping review offers an insight into care structures, capacities, access, care pathways and gaps in care for these patient groups in the German healthcare system. It also takes into account patient and care provider perspectives.

Methods: The study follows the recommendations of the Joanna Briggs Institute and the PRISMA ScR checklist for conducting (rapid) scoping reviews. A MEDLINE search was conducted from 2020 onwards with predefined inclusion and exclusion criteria for evidence sources related to care in Germany.

Results: 44 evidence sources were included. General practitioners and paediatricians act as the first point of contact. Specialised outpatient clinics and rehabilitation facilities take on complex diagnostics and patient treatment. Care networks are rare. Navigating the healthcare system is characteris ed by information gaps, unclear responsibilities and long waiting times, so that those affected often organise their own care. Some report stigmatisation, misdiagnoses and stressful activation recommendations despite the risk of post exertional malaise.

Conclusion: Care is unevenly accessible, poorly coordinated and only limitedly evidence based. Shared knowledge and case databases, training, better diagnostic tools and robust efficacy studies are needed to improve access, management and safety of long/post COVID care.

Source: Ebster M, Gscheidle S, Lange S, Weijburg T, Arnold M. Ein Einblick in die Long/Post COVID-Versorgungslage in Deutschland – ein Rapid Scoping Review [An insight into the long/post COVID care situation in Germany-a rapid scoping review]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2026 Oct 16. German. doi: 10.1007/s00103-026-04313-8. Epub ahead of print. PMID: 42886231. https://link.springer.com/article/10.1007/s00103-026-04313-8 (Full text in German)

Cluster analysis to identify long COVID phenotypes using 129Xe magnetic resonance imaging: a multicentre evaluation

Abstract:

Background: Long COVID impacts ∼10% of people diagnosed with coronavirus disease 2019 (COVID-19), yet the pathophysiology driving ongoing symptoms is poorly understood. We hypothesised that 129Xe magnetic resonance imaging (MRI) could identify unique pulmonary phenotypic subgroups of long COVID. Therefore, we evaluated ventilation and gas exchange measurements with cluster analysis to generate imaging-based phenotypes.

Methods: COVID-negative controls and participants who previously tested positive for COVID-19 underwent 129Xe MRI ∼14 months post-acute infection across three centres. Long COVID was defined as persistent dyspnoea, chest tightness, cough, fatigue, nausea and/or loss of taste/smell at MRI; participants reporting no symptoms were considered fully recovered. 129Xe MRI ventilation defect percent (VDP) and membrane-to-gas (Mem/Gas), red blood cell-to-membrane (RBC/Mem) and red blood cell-to-gas (RBC/Gas) ratios were used in k-means clustering for long COVID, and measurements were compared using ANOVA with post-hoc Bonferroni correction.

Results: We evaluated 135 participants across three centres: 28 COVID-negative (mean±sd age 40±16 years), 34 fully recovered (42±14 years) and 73 long COVID (49±13 years). RBC/Mem (p=0.03) and forced expiratory volume in 1 s (FEV1) (p=0.04) were different between long COVID and COVID-negative; FEV1 and all other pulmonary function tests (PFTs) were within normal ranges. Four unique long COVID clusters were identified compared with recovered and COVID-negative. Cluster 1 was the youngest with normal MRI and mild gas trapping; Cluster 2 was the oldest, characterised by reduced RBC/Mem but normal PFTs; Cluster 3 had mildly increased Mem/Gas with normal PFTs; and Cluster 4 had markedly increased Mem/Gas with concomitant reduction in RBC/Mem and restrictive PFT pattern.

Conclusions: We identified four 129Xe MRI long COVID phenotypes with distinct characteristics. 129Xe MRI can dissect pathophysiological heterogeneity of long COVID to enable personalised patient care.

Source: Eddy RL, Mummy D, Zhang S, Dai H, Bechtel A, Schmidt A, Frizzell B, Gerayeli FV, Leipsic JA, Leung JM, Driehuys B, Que LG, Castro M, Sin DD, Niedbalski PJ. Cluster analysis to identify long COVID phenotypes using 129Xe magnetic resonance imaging: a multicentre evaluation. Eur Respir J. 2024 Mar 28;63(3):2302301. doi: 10.1183/13993003.02301-2023. PMID: 38331459; PMCID: PMC10973687. https://pmc.ncbi.nlm.nih.gov/articles/PMC10973687/ (Full text)

Burnout, Compassion Fatigue, and the Long Haul of Caring for Long COVID

Abstract:

The current landscape of clinician burnout is prompting the need for our health care system to revise its approach toward complex conditions such as long coronavirus disease (COVID), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other postinfectious fatiguing illnesses (PIFIs). We discuss our efforts here at Family Health Center of San Diego (FHCSD) to help share insight and glean perspective from clinicians who have participated in our Centers for Disease Control and Prevention (CDC)-funded 3-year continuing professional development initiative.

The Long COVID and Fatiguing Illness Recovery Program uses multidisciplinary team-based case consultation and peer-to-peer sharing of emerging best and promising practices (ie, teleECHO [Extension for Community Healthcare Outcomes]) to support the management of complex cases associated with long COVID, ME/CFS, and other PIFIs. We believe that this perspective captures a key moment in the trajectory of postpandemic clinician burnout and prompts further reflection and action from the health care system to improve clinician- and patient-level outcomes related to the care of patients with postinfectious fatiguing illnesses.

Source: Ramers CB, Scott JD, Struminger BB. Burnout, Compassion Fatigue, and the Long Haul of Caring for Long COVID. Open Forum Infect Dis. 2024 Feb 7;11(3):ofae080. doi: 10.1093/ofid/ofae080. PMID: 38449917; PMCID: PMC10917153. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10917153/ (Full text)

“None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVI

Abstract:

Background: Understanding of Long COVID has advanced through patient-led initiatives. However, research about barriers to accessing Long COVID services is limited. This study aimed to better understand the need for, access to, and quality of, Long COVID services. We explored health needs and experiences of services, including ability of services to address needs.

Methods: Our study was informed by the Levesque et al.’s (2013) “conceptual framework of access to health care.” We used Interpretive Description, a qualitative approach partly aimed at informing clinical decisions. We recruited participants across five settings. Participants engaged in one-time, semi-structured, virtual interviews. Interviews were transcribed verbatim. We used reflexive thematic analysis. Best practice to ensure methodological rigour was employed.

Results: Three key themes were generated from 56 interviews. The first theme illustrated the rollercoaster-like nature of participants’ Long COVID symptoms and the resulting impact on function and health. The second theme highlighted participants’ attempts to access Long COVID services. Guidance received from healthcare professionals and self-advocacy impacted initial access. When navigating Long COVID services within the broader system, participants encountered barriers to access around stigma; appointment logistics; testing and ‘normal’ results; and financial precarity and affordability of services. The third theme illuminated common factors participants liked and disliked about Long COVID services. We framed each sub-theme as the key lesson (stemming from all likes and dislikes) that, if acted upon, the health system can use to improve the quality of Long COVID services. This provides tangible ways to improve the system based directly on what we heard from participants.

Conclusion: With Long COVID services continuously evolving, our findings can inform decision makers within the health system to better understand the lived experiences of Long COVID and tailor services and policies appropriately.

Source: Brehon K, Miciak M, Hung P, Chen SP, Perreault K, Hudon A, Wieler M, Hunter S, Hoddinott L, Hall M, Churchill K, Brown DA, Brown CA, Bostick G, Skolnik K, Lam G, Weatherald J, Gross DP. “None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVID. BMC Health Serv Res. 2023 Dec 12;23(1):1396. doi: 10.1186/s12913-023-10288-y. PMID: 38087299; PMCID: PMC10714615. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10714615/ (Full text)

Re: What happens inside a long covid clinic?

Dear Editor

As a patient with severe long covid and myalgic encephalomyelitis (M.E.), I was pleased to see the article ‘What happens in a long covid clinic?’ [1] raising awareness of the scale and impact of long covid and the importance of long covid clinics. According to a recent estimate by Altmann et al, 1 in 10 people who contract COVID-19 will be affected by long covid, whilst the oncoming impact of long covid on health systems, populations and economies will be “so large as to be unfathomable”.[2]

Around 2-14% of patients with long covid develop orthostatic tachycardia six to eight months after COVID infection and as many as 60% show some symptoms of POTS. [3] Yet there remain no agreed guidelines for POTS in long covid, making the early diagnosis and management of the condition in primary care challenging. NICE guidance on long covid only mentions POTS in passing with no information on management.[4] The approach outlined by Espinosa-Gonzalez and colleagues to diagnose and manage POTS in primary care could greatly improve function and health for people with POTS.[5]

While I commend the excellent NHS services highlighted in the feature [1], as a patient with severe long covid I would question how prevalent this integrated medically-led care model is across the country despite it being in the ‘The NHS plan for improving long covid services’.[6] Many patients I speak to in long covid support groups report long waits, only to then be offered basic wellbeing classes or rehabilitation without any active treatment for symptoms.

Access to clinics for the most severely affected is variable with not all services offering remote consultations or home visits. It is imperative that long covid clinics are medically led, inter-disciplinary and able to prescribe medications. Additionally, we need the same standard of care for patients with ME/CFS, who are still waiting for NICE guidance from 2021[7] to be implemented. A recent survey noted there remain significant gaps in provision for patients with ME/CFS.[8]

Previously young fit and healthy patients with severe long covid and ME are being left bed-bound without adequate diagnosis, support, care or treatment as there is no specialty or service that is set up to provide this. I went from climbing mountains and working on-call to unable to stand or feed myself in the space of 8 weeks with long covid – I am still severely affected a year later. Given the multi-system complexity of long covid and ME/CFS it is time for an interdisciplinary patient-centred service for post-viral illnesses that recognises the biological nature of the disease and the unique challenges patients with severe long covid and ME have with safely accessing services given their limited energy available, severe cognitive effects, physical immobility and range of complications across bodily systems.

The Department of Health and Social Care are currently seeking views on the interim delivery plan for ME/CFS care in an online consultation [9], which is relevant to both patient groups and professionals and could lay the groundwork for more comprehensive care of post-viral illnesses in the UK.

Yours sincerely,

Dr Alexis Gilbert BSc MBBS MPH FFPH

Source: MJ 2023;382:p1791 https://www.bmj.com/content/382/bmj.p1791/rr (Full text)

Long Covid requires a global response centred on equity and dialogue

Abstract:

Long Covid, or Post-Covid Conditions, is a global health problem. Yet we know strikingly little about the different experiences of Long Covid patients cross-nationally. To address this shortcoming, we conducted an online survey of Long Covid patients active on social media in the U.S. (n = 334, October to December 2021) and Brazil (n = 144, January to April 2022). Our analysis of short answer responses indicates patient dissatisfaction with medical care provided for Long Covid in both the U.S. and Brazil. For Long Covid patients in Brazil, there were additional concerns raised about the lack of local expertise about their condition.

Based on these results, we urge policymakers to expand the education of medical professionals in order to raise awareness of Long Covid. Experts in the Global North should also be encouraged to engage in dialogue with patient groups and experts in the Global South, in order to better understand how local contexts shape the experience of Long Covid.

Source: Au L, Capotescu C, Curi A, Gonçalves Leonel da Silva R, Eyal G. Long Covid requires a global response centred on equity and dialogue. Glob Health Action. 2023 Dec 31;16(1):2244757. doi: 10.1080/16549716.2023.2244757. PMID: 37581581; PMCID: PMC10431739. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10431739/ (Full text)

Using Data Science and a Health Equity Lens to Identify Long-COVID Sequelae Among Medically Underserved Populations

Abstract:

Understanding how post-acute COVID-19 syndrome (PACS or long COVID) manifests among underserved populations, who experienced a disproportionate burden of acute COVID-19, can help providers and policymakers better address this ongoing crisis. To identify clinical sequelae of long COVID among underserved populations treated in the primary care safety net, we conducted a causal impact analysis with electronic health records (EHR) to compare symptoms among community health center patients who tested positive (n=4,091) and negative (n=7,118) for acute COVID-19.

We found 18 sequelae with statistical significance and causal dependence among patients who had a visit after 60 days or more following acute COVID-19. These sequelae encompass most organ systems and include breathing abnormalities, malaise and fatigue, and headache. This study adds to current knowledge about how long COVID manifests in a large, underserved population.

Source: Nasir M, Cook N, Parras D, Mukherjee S, Miller G, Ferres JL, Chung-Bridges K. Using Data Science and a Health Equity Lens to Identify Long-COVID Sequelae Among Medically Underserved Populations. J Health Care Poor Underserved. 2023;34(2):521-534. doi: 10.1353/hpu.2023.0047. PMID: 37464515. https://pubmed.ncbi.nlm.nih.gov/37464515/

“We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms

Abstract:

Background: The “long tail” of the COVID-19 pandemic will be reflected in disabling symptoms that persist, fluctuate or recur for extended periods for an estimated 20%-30% of those who had a SARS-CoV-2 infection; development of effective interventions to address these symptoms must account for the realities faced by these patients. We sought to describe the lived experience of patients living with persistent post-COVID-19 symptoms.

Methods: We conducted a qualitative study, using interpretive description, of the lived experiences of adults experiencing persistent post-COVID-19 symptoms. We collected data from in-depth, semistructured virtual focus groups in February and March 2022. We used thematic analysis to analyze the data and met with several participants twice for respondent validation.

Results: The study included 41 participants (28 females) from across Canada with a mean age of 47.9 years and mean time since initial SARS-CoV-2 infection of 15.8 months. Four overarching themes were identified: the unique burdens of living with persistent post-COVID-19 symptoms; the complex nature of patient work in managing symptoms and seeking treatment during recovery; erosion of trust in the health care system; and the process of adaptation, which included taking charge and transformed self-identity.

Interpretation: Living with persistent post-COVID-19 symptoms within a health care system ill-equipped to provide needed resources profoundly challenges the ability of survivors to restore their well-being. Whereas policy and practice increasingly emphasize the importance of self-management within the context of post-COVID-19 symptoms, new investments that enhance services and support patient capacity are required to promote better outcomes for patients, the health care system and society.

Source: Goodridge D, Lowe TN, Cai S, Herriot FN, Silverberg RV, Heynen M, Hall KC, Peters J, Butcher S, Oyedokun T. “We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms. CMAJ Open. 2023 Jun 13;11(3):E504-E515. doi: 10.9778/cmajo.20220205. PMID: 37311595; PMCID: PMC10270655. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10270655/ (Full text)

Integrated Care Models for Long Coronavirus Disease

Key points:

  • The wide range of persistent symptoms in long COVID requires a coordinated response from multiple medical specialties.
  • Formalized models of care systems and multidisciplinary collaborations began in early 2021 as health care providers recognized the needs of the affected population.
  • Multidisciplinary models largely exist in academic centers and larger cities; however, most care for PASC patients is provided by the primary care providers.

Introduction:

As of July 2022, there have been more than 540 million confirmed cases of coronavirus disease (severe acute respiratory syndrome coronavirus 2 [SARS CoV-2], coronavirus disease 2019 [COVID-19]) during the global pandemic.
Severe acute cases of SARS-CoV-2 respiratory illness continue to strain communities, health care systems, and nations. Evidence-based medical treatments have greatly improved patient outcomes; however, a growing population of survivors with persisting long-term complications has been recognized. This syndrome has been labeled as long COVID or the Post-Acute Sequelae of SARS CoV-2 (PASC).
There is no single accepted definition of PASC. However, PASC is characterized by persistent and/or delayed symptoms or complications beyond 4 weeks of symptom onset or 3 months after a confirmed SARS CoV-2 infection.
The population that experiences PASC is extremely heterogeneous, from those initially asymptomatic with no prior comorbidities to those with preexisting respiratory conditions and prolonged intensive care unit (ICU) stays. The exact prevalence of PASC in the population is unknown with reports of patients with PASC ranging from 10% to 81% of confirmed cases.
Given this large population, treatment resource, health care needs, and social costs will continue to be a growing burden on already exhausted health care systems.
Source: Surendra Barshikar, MD, MBA, Martin Laguerre, MD, Patricia Gordon, MSN, MPH, APRN, FNP-BC, Marielisa Lopez, MD. Integrated Care Models for Long Coronavirus Disease.

 

Socioeconomic inequalities of Long COVID: a retrospective population-based cohort study in the United Kingdom

Abstract:

Objectives: To estimate the risk of Long COVID by socioeconomic deprivation and to further examine the inequality by sex and occupation.

Design: We conducted a retrospective population-based cohort study using data from the ONS COVID-19 Infection Survey between 26 April 2020 and 31 January 2022. This is the largest nationally representative survey of COVID-19 in the UK with longitudinal data on occupation, COVID-19 exposure and Long COVID.

Setting: Community-based survey in the UK.

Participants: A total of 201,799 participants aged 16 to 64 years and with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection.

Main outcome measures: The risk of Long COVID at least 4 weeks after SARS-CoV-2 infection by index of multiple deprivation (IMD) and the modifying effects of socioeconomic deprivation by sex and occupation.

Results: Nearly 10% (n = 19,315) of participants reported having Long COVID. Multivariable logistic regression models, adjusted for a range of variables (demographic, co-morbidity and time), showed that participants in the most deprived decile had a higher risk of Long COVID (11.4% vs. 8.2%; adjusted odds ratio (aOR): 1.46; 95% confidence interval (CI): 1.34, 1.59) compared to the least deprived decile. Significantly higher inequalities (most vs. least deprived decile) in Long COVID existed in healthcare and patient-facing roles (aOR: 1.76; 95% CI: 1.27, 2.44), in the education sector (aOR: 1.68; 95% CI: 1.31, 2.16) and in women (aOR: 1.56; 95% CI: 1.40, 1.73) than men (aOR: 1.32; 95% CI: 1.15, 1.51).

Conclusions: This study provides insights into the heterogeneous degree of inequality in Long COVID by deprivation, sex and occupation. These findings will help inform public health policies and interventions in incorporating a social justice and health inequality lens.

Source: Shabnam S, Razieh C, Dambha-Miller H, Yates T, Gillies C, Chudasama YV, Pareek M, Banerjee A, Kawachi I, Lacey B, Morris EJ, White M, Zaccardi F, Khunti K, Islam N. Socioeconomic inequalities of Long COVID: a retrospective population-based cohort study in the United Kingdom. J R Soc Med. 2023 May 10:1410768231168377. doi: 10.1177/01410768231168377. Epub ahead of print. PMID: 37164035. https://journals.sagepub.com/doi/10.1177/01410768231168377 (Full text)