The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia

Abstract:

Objective Estimate costs of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to patients, government, and Australian society.

Methods Australian ME/CFS patients and their carers were recruited using convenience sampling. Patients completed an online retrospective cost diary, providing ME/CFS-related direct medical, non-medical and indirect costs. Informal care costs were collected directly from carers. Data from the Pharmaceutical Benefits Scheme and Medicare Benefits Schedule were linked to participant survey data. Annual per/patient and total societal costs were estimated, and broken down by category, and presented in 2021AUD. Factors associated with higher costs were investigated using generalized linear models.

Results 175 patients (mean/SD age of 49/14 years, 79.4% female) completed the cost diary. Estimated total annual societal costs of ME/CFS in Australia ranged between $1.38 and $10.09billion, with average annual total costs of $63,400/patient. Three-quarters of these costs were due to indirect costs ($46,731). Disability severity was the key factor associated with higher costs, particularly for indirect costs (being 2.27-fold higher for severe disability than no/mild disability).

Conclusions ME/CFS poses a significant economic burden in Australia, owing mainly to high indirect and informal care costs.

Source: Ting Zhao, Ingrid Cox, Hasnat Ahmed, Julie Campbell, Martin Hensher, Andrew Palmer, Ryan Kelly, Melissa Rogerson, Karen Wills, Barbara de Graaff. The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia. Australian Health Review. AH23106 Accepted 07 November 2023 https://www.publish.csiro.au/AH/justaccepted/AH23106

The cost of primary care consultations associated with long COVID in non-hospitalised adults: a retrospective cohort study using UK primary care data

Abstract:

Objectives To assess incremental costs of primary care consultations associated with post-Covid-19 condition or long COVID, to estimate associated national costs for the United Kingdom population, and to assess risk factors associated with increased costs.

Design A retrospective cohort study using a propensity score matching approach with an incremental cost method to estimate primary care consultation costs associated with long COVID.

Setting UK based primary care general practitioner (GP), nurse and physiotherapist consultation data from the Clinical Practice Research Datalink Aurum primary care database from 31st January 2020 to 15th April 2021.

Participants 472,173 non-hospitalised adults with confirmed SARS-CoV-2 infection were 1:1 propensity score matched to a pool of eligible patients with the same index date, the same number of prior consultations, and similar background characteristics, but without a record of COVID-19. Patients diagnosed with Long COVID (3,871) and those with World Health Organisation (WHO) defined symptoms of long COVID (30,174) formed two subgroups within the cohort with confirmed SARS-CoV-2 infection.

Main outcome measures Costs were calculated using a bottom-up costing approach with consultation cost per working hour in pound sterling (£) obtained from the Personal Social Services Research Unit’s Unit Costs of Health and Social Care 2021. The average incremental cost in comparison to patients with no record of COVID-19 was produced for each patient group, considering only consultation costs at least 12 weeks from the SARS-CoV-2 infection date or matched date for the comparator group (from 15th April 2020 to 15th April 2021). A sensitivity analysis was undertaken which restricted the study population to only those who had at least 24 weeks of follow-up. National costs were estimated by extrapolating incremental costs to the cumulative incidence of COVID-19 in the UK Office for National Statistics COVID-19 Infection Survey. The impacts of risk factors on the cost of consultations beyond 12 weeks from SARS-CoV-2 infection were assessed using an econometric ordinary least squares (OLS) regression model, where coefficients were interpreted as the percentage change in cost due to a unit increase in the specific factor.

Results The incremental cost of primary care consultations potentially associated with long COVID was £2.44 per patient with COVID-19 per year. This increased to £5.72 in the sensitivity analysis. Extrapolating this to the UK population produced a cost estimate of £23,382,452 (90% credible interval: £21,378,567 to £25,526,052) or £54,814,601 (90% credible interval: £50,116,967 to £59,839,762) in the sensitivity analysis. Among patients with COVID-19 infection, a long COVID diagnosis and longer-term reporting of symptoms were associated with a 43% and 44% increase in primary care consultation costs respectively, compared to patients without long COVID symptoms. Older age (49% relative increase in costs in those aged 80 years or older compared to those aged 18 to 29 years), female sex (4% relative increase in costs compared to males), obesity (4% relative increase in costs compared to those of normal weight), comorbidities and the number of prior consultations were all associated with an increase in the cost of primary care consultations. By contrast, those from black ethnic groups had a 6% reduced relative cost compared to those from white ethnic groups.

Conclusions The costs of primary care consultations associated with long COVID in non-hospitalised adults are substantial. Costs are significantly higher among those diagnosed with long COVID, those with long COVID symptoms, older adults, females, and those with obesity and comorbidities.

What is already known on this topic?

  • Long COVID is a global public health challenge, with millions of people affected worldwide.

  • People with a history of long COVID use health services, including primary care, at a higher rate than uninfected individuals even beyond the period of acute infection.

  • The cost of this increased healthcare use is unknown, impeding planning and forecasting of resource requirements needed to adequately support people with long COVID.

What this study adds?

  • Beyond 12 weeks from acute infection, non-hospitalised adults with a history of SARS-CoV-2 infection cost primary care services an additional £2.44 per patient per year greater on average than patients with no prior evidence of infection.

  • Due to the high incidence of COVID-19, this represents a substantial cost to primary care services, in the UK exceeding £20 million for consultations associated with long COVID.

  • These incremental costs are greater in those with a formal diagnosis of long COVID, those reporting related symptoms, older adults, females, and those with obesity.

Source: Jake TuftsDawit T ZemedikunAnuradhaa SubramanianNaijie GuanKrishna GokhalePuja MylesTim WilliamsTom Marshall, Melanie Calvert, Karen MatthewsKrishnarajah NirantharakumarLouise JacksonShamil Haroon. The cost of primary care consultations associated with long COVID in non-hospitalised adults: a retrospective cohort study using UK primary care data.

Mental health among children with long COVID during the COVID-19 pandemic

Abstract:

A growing number of studies report that persons of all ages, infected with SARS-CoV-2, may experience long-term persistent symptoms, known as long COVID (LC) or post COVID-19 condition. This is one of the first studies examining the consequences of LC on children’s mental health. In this case-control study, we compared select mental health aspects of 103 children diagnosed with LC to a control group of 113 children uninfected with SARS-COV-2; all 4-18 years old. Both groups were assessed via parents’ questionnaires.

In comparison to the control group, children with LC exhibited more memory difficulties. However, no group differences emerged in other functional aspects (connection with friends and engagement in physical activities), problems with concentration, or levels of emotional-behavioral problems (externalizing, internalizing, ADHD, and PTSD symptoms).

We also found that children with LC had greater exposure to COVID-19-related stressors. Higher levels of parental worries regarding their children’s functioning and economic difficulties at home significantly predicted higher levels of children’s emotional-behavioral problems and were better predictors than the child’s age, social functioning, or LC diagnosis.

Conclusion: LC was associated with impairments in some aspects of children’s memory which may relate to academic functioning, but not with higher rates of emotional-behavioral problems, thus warranting interventional programs addressing school functioning and cognitive abilities in this population. Additionally, parents’ economic stress and worries regarding their child’s emotional adjustment during the pandemic, are important factors affecting pandemic-related emotional-behavioral problems among children, regardless of COVID-19 infection, that should be addressed.

What is Known:

• Children may have long COVID (LC) after being infected with SARS-COV-2.

What is New:

• LC may be associated to impairments in some aspects of children’s memory, as reported by parents.

• Parents’ economic stress and worries concerning their children’s emotional adjustment during the pandemic are associated with more distress in their children.

Source: Shachar-Lavie I, Shorer M, Segal H, Fennig S, Ashkenazi-Hoffnung L. Mental health among children with long COVID during the COVID-19 pandemic. Eur J Pediatr. 2023 Feb 14:1–9. doi: 10.1007/s00431-023-04854-z. Epub ahead of print. PMID: 36786887; PMCID: PMC9925927. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9925927/ (Full text)

A preliminary estimate of the economic impact of long COVID in the United States

Post-Acute Sequelae of SARS CoV-2 infection (PASC), more commonly referred to as Long COVID, is one of the most daunting health-care grand challenges facing the United States today. Affecting millions of Americans, Long COVID extracts a huge cost both socially and economically. In this article, we provide a preliminary estimate of the annual income loss and medical costs due to Long COVID in the United States. With many Long COVID patients either meeting the diagnostic criteria for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) or exhibiting symptoms consistent with ME/CFS, we utilize ME/CFS to help guide our estimates. Based on the nearly 86 million documented US COVID survivors as of June 25, 2022, and considering a range of 5% to 20% of those survivors currently afflicted with Long COVID, we estimate annual medical costs to range from $43 billion to $172 billion, and lost income to range from $101 billion to $430 billion. This corresponds to an annual economic impact (exclusive of costs of disability services, social services, and lost income on the part of caretakers) ranging from roughly $140 billion to $600 billion.

Source: Arthur A. Mirin (2022) A preliminary estimate of the economic impact of long COVID in the United States, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2022.2124064

Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications

Abstract:

In this article, we update our earlier analyses of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) economic impact and its National Institutes of Health (NIH) funding versus disease burden, taking into account the anticipated new cases of ME/CFS resulting from COVID-19.

Prior to the COVID pandemic, we estimated a United States ME/CFS prevalence of 1.5 million and an annual economic impact of $36–51 billion. Now, due to COVID and its resulting post-acute sequalae, we estimate total ME/CFS prevalence could rise to between five and nine million. This would incur an annual U.S. economic impact of $149 to $362 billion in medical expenses and lost income, exclusive of other costs, such as disability benefits, social services, and lost wages of caretakers. NIH funding for ME/CFS research would need to expand from the current amount of $15 million per year to approximately $472–$600 million annually, up to a 40-fold increase, to be commensurate with that of similarly burdensome diseases.

Source: Arthur A. Mirin, Mary E. Dimmock & Leonard A. Jason (2022) Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2022.2062169 https://www.tandfonline.com/doi/abs/10.1080/21641846.2022.2062169?journalCode=rftg20  (Full text)

Direct Costs of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Latvia

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease of various etiologies, characterised by chronic fatigue not alleviated by rest, and multi-system disorder leading to deterioration in quality of life. There are not sufficient studies to reveal the economic impact of this disease on society, significantly due to the low level of diagnostic. Therefore, the aim of this research is to determine the approximate direct costs of ME/CFS to society in Latvia, assuming that these data could be suitable for other European countries too, and to consider possibilities to enhance diagnostic.

Source: Araja, Diana & Berkis, Uldis & Lunga, Asja & Murovska, Modra. (2022). POSA63 Direct Costs of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Latvia. Value in Health. 25. S45. 10.1016/j.jval.2021.11.208. https://www.researchgate.net/publication/357962677_POSA63_Direct_Costs_of_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome_MECFS_in_Latvia

A model framework for projecting the prevalence and impact of Long-COVID in the UK

Abstract:

The objective of this paper is to model lost Quality Adjusted Life Years (QALYs) from symptoms arising from COVID-19 disease in the UK population, including symptoms of ‘long-COVID’. The scope includes QALYs lost to symptoms, but not deaths, due to acute COVID-19 and long-COVID. The prevalence of symptomatic COVID-19, encompassing acute symptoms and long-COVID symptoms, was modelled using a decay function. Permanent injury as a result of COVID-19 infection, was modelled as a fixed prevalence. Both parts were combined to calculate QALY loss due to COVID-19 symptoms. Assuming a 60% final attack rate for SARS-CoV-2 infection in the population, we modelled 299,730 QALYs lost within 1 year of infection (90% due to symptomatic COVID-19 and 10% permanent injury) and 557,764 QALYs lost within 10 years of infection (49% due to symptomatic COVID-19 and 51% due to permanent injury). The UK Government willingness-to-pay to avoid these QALY losses would be £17.9 billion and £32.2 billion, respectively.

Additionally, 90,143 people were subject to permanent injury from COVID-19 (0.14% of the population). Given the ongoing development in information in this area, we present a model framework for calculating the health economic impacts of symptoms following SARS-CoV-2 infection. This model framework can aid in quantifying the adverse health impact of COVID-19, long-COVID and permanent injury following COVID-19 in society and assist the proactive management of risk posed to health. Further research is needed using standardised measures of patient reported outcomes relevant to long-COVID and applied at a population level.

Source: Martin C, Luteijn M, Letton W, Robertson J, McDonald S. A model framework for projecting the prevalence and impact of Long-COVID in the UK. PLoS One. 2021 Dec 2;16(12):e0260843. doi: 10.1371/journal.pone.0260843. PMID: 34855874; PMCID: PMC8639065. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8639065/ (Full text)

Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity, and progression are extremely variable. Despite being relatively common, the condition is poorly understood and routine diagnostic tests and biomarkers are unavailable. There is no evidence on the economic impact of ME/CFS in Ireland.

Methods: Adopting a patient and public involvement approach, we undertook three semi-structured focus groups, which together included 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland, including how and why they arise. Focus groups were audio-recorded and transcribed verbatim, and we employed thematic analysis following the approach set out in Braun and Clarke (2006).

Results: Themes from the data were: (1) Healthcare barriers and costs; (2) Socioeconomic costs; (3) Costs of disability; and, (4) Carer-related costs. Patient participants described a range of barriers to effective healthcare that led to extra costs, including delays getting a diagnosis, poor awareness/understanding of the condition by healthcare professionals, and a lack of effective treatments. These were linked to poor prognosis of the illness by participants who, as a result, faced a range of indirect costs, including poorer labour market and education outcomes, and lower economic well-being. Direct extra costs of disability were also described, often due to difficulties accessing appropriate services and supports. Informal carer participants described a range of impacts, including time costs, burnout, and impacts on work and study.

Conclusions: The data suggests that ME/CFS patients face a wide range of costs, while there are also wider societal costs in the form of costs to the health service, lost productivity, and impacts on informal carers. These results will inform ongoing research that aims to quantify the economic burden of ME/CFS in Ireland and raise awareness of the illness amongst healthcare providers and policymakers.

Source: Cullinan J, Ní Chomhraí O, Kindlon T et al. Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study [version 1; peer review: 2 approved]. HRB Open Res 2020, 3:88 (https://doi.org/10.12688/hrbopenres.13181.1) https://hrbopenresearch.org/articles/3-88 (Full text)

Updating the National Academy of Medicine ME/CFS prevalence and economic impact figures to account for population growth and inflation

Abstract:

We update the US prevalence and economic impact estimates of the 2015 National Academy of Medicine report on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), taking into account growth in population, economic inflation, and inclusion of children. We find a rough doubling of the ME/CFS prevalence and economic impact figures in the US, with low-end prevalence coming out to 1.5 million and economic impact having a range of 36–51 billion dollars per year.

Source: L.A. Jason & A.A. Mirin (2021) Updating the National Academy of Medicine ME/CFS prevalence and economic impact figures to account for population growth and inflation. Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2021.1878716 https://www.tandfonline.com/doi/abs/10.1080/21641846.2021.1878716?journalCode=rftg20

The Economic Impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort

Abstract:

Objectives: This study aims to estimate direct and indirect health economic costs associated with government and out-of-pocket (OOP) expenditure based on health care service utilization and lost income of participants and carers, as reported by Australian Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patient survey participants.

Design: A cost of illness study was conducted to estimate Australian cost data for individuals with a ME/CFS diagnosis as determined by the Canadian Consensus Criteria (CCC), International Consensus Criteria (ICC), and the 1994 CDC Criteria (Fukuda).

Setting and participants: Survey participants identified from a research registry database provided self-report of expenditure associated with ME/CFS related healthcare across a 1-month timeframe between 2017 and 2019.

Main outcome measures: ME/CFS related direct annual government health care costs, OOP health expenditure costs, indirect costs associated with lost income and health care service use patterns.

Results: The mean annual cost of health care related expenditure and associated income loss among survey participants meeting diagnostic criteria for ME/CFS was estimated at $14.5 billion. For direct OOP and Government health care expenditure, high average costs were related to medical practitioner attendance, diagnostics, natural medicines, and device expenditure, with an average attendance of 10.6 referred attendances per annum and 12.1 GP visits per annum related specifically to managing ME/CFS.

Conclusions: The economic impacts of ME/CFS in Australia are significant. Improved understanding of the illness pathology, diagnosis, and management, may reduce costs, improve patient prognosis and decrease the burden of ME/CFS in Australia.

Source: Close S, Marshall-Gradisnik S, Byrnes J, Smith P, Nghiem S, Staines D. The Economic Impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort. Front Public Health. 2020 Aug 21;8:420. doi: 10.3389/fpubh.2020.00420. PMID: 32974259; PMCID: PMC7472917. https://www.frontiersin.org/articles/10.3389/fpubh.2020.00420/full (Full text)