Tag: public health

Long COVID Disability Burden in US Adults: YLDs and NIH Funding Relative to Other Conditions

Abstract:

Background Long COVID (LC) is novel, debilitating and likely chronic. Yet, scant data exist about its disability burden to guide scientific research and public health planning. We estimated Long COVID’s non-fatal disease burden in US adults and its FY2024 actual: burden-commensurate research funding from the National Institutes of Health (NIH) relative to other conditions, and biological sex.

Methods We present YLDs/100,000 for 70 NIH Research, Condition, and Disease Categories (RCDCs). Prevalence of disabling Long COVID was obtained from cross sectional surveys of representative samples of US adults, from September 2022 to August 2023. Disabling Long COVID was defined as incident symptoms persisting more than 3 months post-COVID, that significantly compromise daily activities. We calculated burden-commensurate funding for the top YLD conditions and for female vs. male dominant conditions.

Findings Disabling Long COVID was reported by 1.5% (n= 10,401) of n=757,580 respondents: Compared to the overall sample, those with disabling LC disproportionately identify as female (64.4% vs. 51.4%) and experiencing disability (80.8% vs. 52.9%) anxiety (57.5% vs. 23.8%) and depression (51.3% vs.18.5%). It ranked in the top 25% of YLDs at 320/100,000, between Alzheimer’s (279.4/100,000) and asthma (355.7/100,000) but received just 10% of its actual: YLD-commensurate funding. Only 5 conditions received less actual: burden: commensurate funding, including Myalgic Encephalitis/Chronic Fatigue Syndrome (<1%), another post-viral, female-dominant condition.

Interpretation LC has debilitated 3.8 million (weighted frequency) US adults. Research funding for it, like other female dominant conditions, lags behind its disability burden.

Research in Context Evidence before this study – We analyzed Long-COVID’s (LC) non-fatal disease burden in the US–represented by YLD (years lived with disability= prevalence x disability weight) — and National Institutes of Health (NIH) research 2024 funding relative to other conditions. We searched PubMed through 11/28/2023 for Long COVID prevalence (US), and Long COVID disability and disease burden (not US-specific). The keywords “years lived with disability” + “COVID” yielded n= 38 articles (11/29/23); but most referenced “disability-adjusted life years” (DALYs) in other countries. Similarly, “disease burden” + Long COVID yielded 23 papers, but no US YLD data. See Supplement 1 for meta-analyses, systematic reviews and US studies of Long COVID prevalence and impact.

We instead sourced YLD data from the US Census Bureau’s Household Pulse Survey (HPS) and the Institute for Health Metrics and Evaluation (IHME) /Global Burden of Disease (GBD) Long COVID Study Group. The HPS queries adults about Long COVID-related symptoms and their impact on daily activities. We applied the IHME/GBD’s estimated Long COVID disability weight of 0.21 and harmonized it with our LC case definition from the HPS data in consultation with IHME/GBD researchers. To harmonize IHME/GBD disability weights for non-LC diseases/conditions with the NIH’s terminology, we consulted with NIH staff. LC definition and measurement affects prevalence and burden estimates; our use of high-quality data sources and transparency in reporting how they were applied reduces the risk of biased assumptions.

Added value of this study- Long COVID is a chronic debilitating condition. While there is ample research on COVID’s acute illness and loss of life, there are no population-based data on its disability burden. We provide that data. To guide scientific research and public health planning, we report YLDs associated with disabling Long COVID (i.e., symptoms significantly limit activity), and; compare it to other conditions’ YLDs, NIH funding, and female-vs. male-dominance. It ranked in the top 25% of YLDs at 320/100,000, between Alzheimer’s (279.4/100,000) and asthma (355.7/100,000) but received just 10% of its YLD-commensurate funding. Only 5 conditions received less burden-commensurate funding; 3/5 were female-dominant, including Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS) at <1%, another post-viral condition that shares significant overlap with Long COVID. Overall, median funding/YLD was >= 5 times greater for male-vs. female-dominant conditions.

Implications of all the available evidence-Nearly 4 million US adults (weighted frequency) live with disabling Long COVID. They disproportionately identify as female and as having a disability, anxiety and depression. Yet NIH funding for diagnostic and treatment research for Long COVID hasn’t kept pace with its disability burden.

Source: Karen Bonuck, Qi Gao, Seth Congdon, Ryung Kim. Long COVID Disability Burden in US Adults: YLDs and NIH Funding Relative to Other Conditions. medRxiv 2024.01.09.24301057; doi: https://doi.org/10.1101/2024.01.09.24301057 https://www.medrxiv.org/content/10.1101/2024.01.09.24301057v1.full-text (Full text)

The importance of patient-partnered research in addressing long COVID: Takeaways for biomedical research study design from the RECOVER Initiative’s Mechanistic Pathways taskforce

Abstract:

The NIH-funded RECOVER study is collecting clinical data on patients who experience a SARS-CoV-2 infection. As patient representatives of the RECOVER Initiative’s Mechanistic Pathways task force, we offer our perspectives on patient motivations for partnering with researchers to obtain results from mechanistic studies. We emphasize the challenges of balancing urgency with scientific rigor. We recognize the importance of such partnerships in addressing post-acute sequelae of SARS-CoV-2 infection (PASC), which includes ‘long COVID,’ through contrasting objective and subjective narratives.

Long COVID’s prevalence served as a call to action for patients like us to become actively involved in efforts to understand our condition. Patient-centered and patient-partnered research informs the balance between urgency and robust mechanistic research. Results from collaborating on protocol design, diverse patient inclusion, and awareness of community concerns establish a new precedent in biomedical research study design. With a public health matter as pressing as the long-term complications that can emerge after SARS-CoV-2 infection, considerate and equitable stakeholder involvement is essential to guiding seminal research. Discussions in the RECOVER Mechanistic Pathways task force gave rise to this commentary as well as other review articles on the current scientific understanding of PASC mechanisms.

Source: Kim C, Chen B, Mohandas S, Rehman J, Sherif ZA, Coombs K; RECOVER Mechanistic Pathways Task Force; RECOVER Initiative. The importance of patient-partnered research in addressing long COVID: Takeaways for biomedical research study design from the RECOVER Initiative’s Mechanistic Pathways taskforce. Elife. 2023 Sep 22;12:e86043. doi: 10.7554/eLife.86043. PMID: 37737716; PMCID: PMC10516599. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10516599/ (Full text)

Long-term health consequences among individuals with SARS-CoV-2 infection compared to individuals without infection: results of the population-based cohort study CoMoLo Follow-up

Abstract:

Background: Most of the previous studies on health sequelae of COVID-19 are uncontrolled cohorts and include a relatively short follow-up. This population-based multi-center cohort study examined health consequences among individuals about 1 to 1.5 years after SARS-CoV-2 infection compared with non-infected.

Methods: The study population consisted of adults (≥ 18 years) from four municipalities particularly affected by the COVID-19 pandemic in the year 2020 who completed a detailed follow-up questionnaire on health-related topics. Exposure was the SARS-CoV-2 infection status (based on IgG antibodies, PCR test, or physician-diagnosis of COVID-19) at baseline (May to December 2020). Outcomes assessed at follow-up (October 2021 to January 2022; mean: 452 days) included recurrent or persistent health complaints, incident diseases, health-related quality of life (PROMIS-29), subjective health, and subjective memory impairment. Logistic and linear regression models were adjusted for baseline sociodemographic and lifestyle characteristics (age, sex, municipality, education, smoking, body mass index), pre-existing health conditions (chronic disease/health problem, health-related activity limitation, depressive/anxiety disorder), and follow-up time.

Results: Among 4817 participants, 350 had a SARS-CoV-2 infection at baseline and 4467 had no infection at baseline or during follow-up. Those with an infection statistically significantly more often reported 7 out of 18 recurrent or persistent health complaints at follow-up: smell/taste disorders (12.8% vs. 3.4%, OR 4.11), shortness of breath (23.0% vs. 9.5%, 3.46), pain when breathing (4.7% vs. 1.9%, 2.36), fatigue (36.9% vs. 26.1%, 1.76), weakness in legs (12.8% vs. 7.8%, 1.93), myalgia/joint pain (21.9% vs. 15.1%, 1.53) and cough (30.8% vs. 24.8%, 1.34) and 3 out of 6 groups of incident diseases: liver/kidney (2.7% vs. 0.9%, 3.70), lung (3.2% vs. 1.1%, 3.50) and cardiovascular/metabolic (6.5% vs. 4.0%, 1.68) diseases. Those with an infection were significantly more likely to report poor subjective health (19.3% vs. 13.0%, 1.91), memory impairment (25.7% vs. 14.3%, 2.27), and worse mean scores on fatigue and physical function domains of PROMIS-29 than non-infected.

Conclusion: Even after more than one year, individuals with SARS-CoV-2 infection showed an increased risk of various health complaints, functional limitations, and worse subjective well-being, pointing toward profound health consequences of SARS-CoV-2 infection relevant for public health.

Source: Heidemann C, Sarganas G, Du Y, Gaertner B, Poethko-Müller C, Cohrdes C, Schmidt S, Schlaud M, Scheidt-Nave C. Long-term health consequences among individuals with SARS-CoV-2 infection compared to individuals without infection: results of the population-based cohort study CoMoLo Follow-up. BMC Public Health. 2023 Aug 21;23(1):1587. doi: 10.1186/s12889-023-16524-8. PMID: 37605232; PMCID: PMC10440884. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10440884/ (Full text)

Advancing the Management of Long COVID by Integrating into Health Informatics Domain: Current and Future Perspectives

Abstract:

The ongoing COVID-19 pandemic has profoundly affected millions of lives globally, with some individuals experiencing persistent symptoms even after recovering. Understanding and managing the long-term sequelae of COVID-19 is crucial for research, prevention, and control. As a result, to monitor the health of individuals affected by these conditions, they must maintain up-to-date health records using digital health informatics apps for surveillance.

In this review, we provide an overview of the existing literature on identifying long COVID manifestations through hierarchical classification and the characterization of long COVID by different hierarchical groups based on the Human Phenotype Ontology (HPO). We outline the aspects of the National COVID Cohort Collaborative (N3C) and Researching COVID to Enhance Recovery (RECOVER) in artificial intelligence (AI) to identify long COVID.

Knowledge exploration, using the concept map for the clinical pathways of long COVID presented in this paper, provides an overview of the data needed to explore tackling the long-term effect of COVID-19 by integrating innovative cohesive frameworks and designing health informatics-based applications. To the best of our knowledge, this is the first paper to explore the potential incorporation of long COVID as a variable risk factor within a digital health informatics application.

Source: Ambalavanan, R.; Snead, R.S.; Marczika, J.; Kozinsky, K.; Aman, E. Advancing the Management of Long COVID by Integrating into Health Informatics Domain: Current and Future Perspectives. Preprints.org2023, 2023062111. https://doi.org/10.20944/preprints202306.2111.v1 https://www.preprints.org/manuscript/202306.2111/v1 (Full text available as PDF file)

The COVID-19 Pandemic and the $16 Trillion Virus

The SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2) pandemic is the greatest threat to prosperity and well-being the US has encountered since the Great Depression. This Viewpoint aggregates mortality, morbidity, mental health conditions, and direct economic losses to estimate the total cost of the pandemic in the US on the optimistic assumption that it will be substantially contained by the fall of 2021. These costs far exceed those associated with conventional recessions and the Iraq War, and are similar to those associated with global climate change. However, increased investment in testing and contact tracing could have economic benefits that are at least 30 times greater than the estimated costs of the investment in these approaches.

Read the full text here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7604733/

Also see: The Economic Cost of Long COVID: An Update: https://scholar.harvard.edu/files/cutler/files/long_covid_update_7-22.pdf

Source: Cutler DM, Summers LH. The COVID-19 Pandemic and the $16 Trillion Virus. JAMA. 2020;324(15):1495–1496. doi:10.1001/jama.2020.19759. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7604733/ (Full text)

The Economic Cost of Long COVID: An Update

Relative to my earlier estimate with Lawrence Summers of the cost of long COVID of $2.6 trillion, the higher number here is higher: $3.7 trillion in total. The higher estimate is largely a result of the greater prevalence of long COVID than we had guessed at the time. There are about 10 times the number of people with long COVID as have died of COVID. Because long COVID is so new, there is uncertainty about all of the numbers involved in the calculations. Still, the costs here are conservative, based on only cases to date. The enormity of these costs implies that policy to address long COVID are urgently needed. With costs this high, virtually any amount spent on long COVID detection, treatment, and control would result in benefits far above what it costs.

Read the full text here: https://scholar.harvard.edu/files/cutler/files/long_covid_update_7-22.pdf

Note: See The COVID-19 Pandemic and the $16 Trillion Virus for background.

Source: David M. Cutler. The Economic Cost of Long COVID: An Update. Harvard University.

Long Covid: conceptualizing the challenges for public health

Abstract:

Background: Long Covid has caused significant disruption to public services, economies and population health worldwide, but no single public health approach has proven effective in its management. This essay was the winning entry for the Faculty of Public Health’s Sir John Brotherston Prize 2022.

Methods: In this essay, I synthesize existing literature on public health policy in long Covid, and discuss the challenges and opportunities posed by long Covid for the public health profession. The utility of specialist clinics and community care, in the UK and internationally, is examined, as well as key outstanding issues relating to evidence generation, health inequality and defining long Covid. I then use this information to inform a simple conceptual model.

Results: The generated conceptual model integrates community- and population-level interventions; key areas of identified policy need at both levels include ensuring equitable access to long Covid care, developing screening programmes for high-risk populations, co-production of research and clinical services with patients, and using interventions to generate evidence.

Conclusions: Significant challenges remain in the management of long Covid from a public health policy perspective. Multidisciplinary community-level and population-level interventions should be employed with a view to achieving an equitable and scalable model of care.

Source: Prashar J. Long Covid: conceptualizing the challenges for public health. J Public Health (Oxf). 2023 May 2:fdac153. doi: 10.1093/pubmed/fdac153. Epub ahead of print. PMID: 37132023. https://academic.oup.com/jpubhealth/advance-article/doi/10.1093/pubmed/fdac153/7147865 (Full text)

Epidemiological and clinical perspectives of long COVID syndrome

Abstract:

Long COVID, or post-acute COVID-19 syndrome, is characterized by multi-organ symptoms lasting 2+ months after initial COVID-19 virus infection. This review presents the current state of evidence for long COVID syndrome, including the global public health context, incidence, prevalence, cardiopulmonary sequelae, physical and mental symptoms, recovery time, prognosis, risk factors, rehospitalization rates, and the impact of vaccination on long COVID outcomes. Results are presented by clinically relevant subgroups.

Overall, 10-35% of COVID survivors develop long COVID, with common symptoms including fatigue, dyspnea, chest pain, cough, depression, anxiety, post-traumatic stress disorder, memory loss, and difficulty concentrating. Delineating these issues will be crucial to inform appropriate post-pandemic health policy and protect the health of COVID-19 survivors, including potentially vulnerable or underrepresented groups. Directed to policymakers, health practitioners, and the general public, we provide recommendations and suggest avenues for future research with the larger goal of reducing harms associated with long COVID syndrome.

Source: Huerne K, Filion KB, Grad R, Ernst P, Gershon AS, Eisenberg MJ. Epidemiological and clinical perspectives of long COVID syndrome. Am J Med Open. 2023 Jun;9:100033. doi: 10.1016/j.ajmo.2023.100033. Epub 2023 Jan 18. PMID: 36685609; PMCID: PMC9846887. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9846887/ (Full text)

Long COVID and children’s rights

Abstract:

This policy note calls for the recognition of long COVID as a children’s rights issue in the UK. While children have been affected by school closures and lockdown restrictions throughout the pandemic, the relatively low rates of COVID-related hospitalizations and deaths among children have led to their de-prioritization in efforts to reduce the spread of the SARS-CoV-2 virus. Yet infection rates are extremely high among children in the UK, particularly secondary school students, and early studies suggest that many are not recovering for up to a year after infection.

Prolonged illness following infection, ‘long COVID’, has implications for children’s rights to education, health, and a private and family life, among others. By extension, children have a right to have their best interests taken into consideration in policy-making processes relating to long COVID. The policy note thus argues that we must recognize the significance of long COVID in children and, upon this basis, call upon the State to address its human rights implications.

Source: Vivek Bhatt, Long COVID and children’s rights, Journal of Human Rights Practice, 2023;, huac047, https://doi.org/10.1093/jhuman/huac047 (Full text)

A comparison of health-related factors between patients diagnosed with ME/CFS and patients with a related symptom picture but no ME/CFS diagnosis: a cross-sectional exploratory study

Abstract:

Background: In chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), the capacity for activity and participation is strongly limited. The disease definition is very broad, and considering the lack of evidence for best treatment, it is important to understand what is ME/CFS-specific in the biopsychosocial perspective in comparison with similar syndromes. The objective was to study the difference between those diagnosed with ME/CFS and those with similar symptoms but no ME/CFS diagnosis for self-perceived level of physical activity, work ability, anxiety/depression, and health-related quality of life.

Methods: This was a clinical cross-sectional study with data collected from mailed questionnaires. The following variables were compared between patients diagnosed with ME/CFS (n = 205) and those with similar symptoms but no diagnosis (n = 57); level of physical activity, Work ability index (WAI), Hospital anxiety and depression scale (HAD-A/HAD-D), and RAND-36 Physical functioning, Role limitations due to physical health problems, Role limitations due to personal or emotional problems, Social functioning, Energy/fatigue, Bodily pain, Emotional well-being, and General health perceptions. The Chi-squared test (nominal data), the Mann-Whitney U test, the Student’s t test and regression analysis were used to analyze the data.

Results: The group diagnosed with ME/CFS had a more impaired physical and mental exertion ability as compared to the group that had similar symptoms but was not diagnosed with ME/CFS, shown by a RAND-36 lower index of physical role functioning, social functioning, energy, worse pain and poorer overall health (p ≤ 0.05). In contrast, no significant group differences emerged for weekly level of physical activity, work ability, anxiety/depression, and RAND-36 Emotional role limitation and well-being.

Conclusion: Our results indicate that those with a diagnosis of ME/CFS are characterized by an impaired ability for physical or mental exertion, worse pain, and poorer overall health as compared to individuals with similar symptoms but for whom ME/CFS-diagnosis was not established. The results may be cautiously interpreted as support when focusing on patients’ self-care in terms of management of energy levels. The results must however be verified in future studies.

Source: Bernhoff G, Rasmussen-Barr E, Bunketorp Käll L. A comparison of health-related factors between patients diagnosed with ME/CFS and patients with a related symptom picture but no ME/CFS diagnosis: a cross-sectional exploratory study. J Transl Med. 2022 Dec 9;20(1):577. doi: 10.1186/s12967-022-03769-x. PMID: 36494693; PMCID: PMC9733040. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03769-x (Full text)