economic burden – American ME and CFS Society

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 31^st January 2020 to 15^th 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 15^th April 2020 to 15^th 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 Tufts, Dawit T Zemedikun, Anuradhaa Subramanian, Naijie Guan, Krishna Gokhale, Puja Myles, Tim Williams, Tom Marshall, Melanie Calvert, Karen Matthews, Krishnarajah Nirantharakumar, Louise Jackson, Shamil Haroon. The cost of primary care consultations associated with long COVID in non-hospitalised adults: a retrospective cohort study using UK primary care data. medRxiv 2023.03.12.23287049; doi: https://doi.org/10.1101/2023.03.12.23287049 https://www.medrxiv.org/content/10.1101/2023.03.12.23287049v1.full-text

Long-haul COVID: healthcare utilization and medical expenditures 6 months post-diagnosis

Abstract:

Background: Despite extensive evidence that COVID-19 symptoms may persist for up to a year, their long-term implications for healthcare utilization and costs 6 months post-diagnosis remain relatively unexplored. We examine patient-level association of COVID-19 diagnosis association of COVID-19 diagnosis with average monthly healthcare utilization and medical expenditures for up to 6 months, explore heterogeneity across age groups and determine for how many months post-diagnosis healthcare utilization and costs of COVID-19 patients persist above pre-diagnosis levels.

Methods: This population-based retrospective cohort study followed COVID-19 patients’ healthcare utilization and costs from January 2019 through March 2021 using claims data provided by the COVID-19 Research Database. The patient population includes 250,514 individuals infected with COVID-19 during March-September 2020 and whose last recorded claim was not hospitalization with severe symptoms. We measure the monthly number and costs of total visits and by telemedicine, preventive, urgent care, emergency, immunization, cardiology, inpatient or surgical services and established patient or new patient visits.

Results: The mean (SD) total number of monthly visits and costs pre-diagnosis were .4783 (4.0839) and 128.06 (1182.78) dollars compared with 1.2078 (8.4962) visits and 351.67 (2473.63) dollars post-diagnosis. COVID-19 diagnosis associated with .7269 (95% CI, 0.7088 to 0.7449 visits; P < .001) more total healthcare visits and an additional $223.60 (95% CI, 218.34 to 228.85; P < .001) in monthly costs. Excess monthly utilization and costs for individuals 17 years old and under subside after 5 months to .070 visits and $2.77, persist at substantial levels for all other groups and most pronounced among individuals age 45-64 (.207 visits and $73.43) and 65 years or older (.133 visits and $60.49).

Conclusions: This study found that COVID-19 diagnosis was associated with increased healthcare utilization and costs over a six-month post-diagnosis period. These findings imply a prolonged burden to the US healthcare system from medical encounters of COVID-19 patients and increased spending.

Source: Koumpias AM, Schwartzman D, Fleming O. Long-haul COVID: healthcare utilization and medical expenditures 6 months post-diagnosis. BMC Health Serv Res. 2022 Aug 8;22(1):1010. doi: 10.1186/s12913-022-08387-3. PMID: 35941617; PMCID: PMC9358916. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9358916/ (Full text)

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)

Counting The Cost – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Foreword:

For the past 20 years there has been extensive argument in the UK about the causes and diagnostic criteria for this illness. For some considerable time, the conventional wisdom was that this illness was purely psychological in origin.

The World Health Organisation has clearly classified CFS/ME as a neurological disease in its International Classification of Diseases (ICD), section G93.3.

Despite this clarity, there is still a lack of universal agreement about CFS/ ME in the UK. This has led to a paralysis of research into both the biomedical causes of and treatments for CFS/ME, and the research that has been done has focused primarily on the psychological side.

The time has come for a proper research strategy for CFS/ME, looking at both bio-medical causes and treatments. In order to commence a dialogue with government and other interested parties, it is essential for everyone to be on the same page. To achieve that degree of agreement will be a challenge, but I believe the first step in that process is to start a new public conversation about this horrible illness.

The purpose of this report by the health think tank 2020health, sponsored by the Optimum Health Clinic, is to do just that. Nothing concentrates the mind like money. This is the first cost of illness study of CFS/ME to the UK economy combining direct costs (including primary and secondary care contacts, prescription and over the counter

medications, and complimentary treatments) and indirect costs (including work productivity losses, informal care and welfare payments). The results are staggering.

In commissioning this report, our hope is that we can:

* Demonstrate clearly all the costs of CFS/ME to the UK economy;

* Use this report to start a new public conversation about the illness;

* Start a dialogue with all interested parties to create a new strategy to research the bio-medical causes of and treatments for CFS/ME

You can read the full report HERE.

Chronic fatigue, chronic fatigue syndrome, and fibromyalgia. Disability and health-care use

Abstract:

OBJECTIVES: Disabling chronic fatigue that does not meet criteria for chronic fatigue syndrome (CFS) or fibromyalgia (FM) is a condition thought to be associated with substantial disability and an apparently high use of health-care services. The authors compare patients who have chronic fatigue, CFS, FM, or CFS and FM together (CFS+FM) on employment status, self-reported disability, number of medical care visits, type of services obtained, and other diagnoses received.

METHODS: The authors studied 402 patients from a university-based chronic fatigue clinic. All patients underwent an initial structured diagnostic assessment. One hundred forty-seven patients met case criteria for CFS, 28 for FM, 61 for CFS+FM, and 166 fell in the residual chronic fatigue group. Of these patients, 388 completed a follow-up questionnaire an average of 1.7 years later. Chi-squared tests and analysis of variance were used to compare groups on follow-up measures of health-care use and disability.

RESULTS: Patients with chronic fatigue, CFS, FM, and CFS+FM were similar in terms of disability and health-care use, though those with CFS+FM were significantly more likely to be unemployed and to use more chiropractic and “other” provider services. Rates of unemployment ranged from 26% (chronic fatigue) to 51% (CFS+FM). Overall, patients reported a mean of 21 visits to a wide variety health-care providers during the previous year, with no significant differences between groups.

CONCLUSIONS: Chronic fatigue, CFS, and FM are associated with considerable personal and occupational disability and low rates of employment. The potentially large economic burden of these disorders underscores the need for accurate estimates of direct and indirect costs, the relative contribution of individual factors to disability, and the need to develop targeted rehabilitation programs.

Source: Bombardier CH, Buchwald D. Chronic fatigue, chronic fatigue syndrome, and fibromyalgia. Disability and health-care use. Med Care. 1996 Sep;34(9):924-30. http://www.ncbi.nlm.nih.gov/pubmed/8792781