The Economic Impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort (2020) Marshall-Gradisnik et al.

rvallee

rvallee

Senior Member (Voting Rights)
(I'm not entirely sure where to post this since it's neither biomedical nor psychosocial research...)


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

Shara Close, Sonya Marshall-Gradisnik, Joshua Byrnes, Peter Smith, Son Nghiem and Don Staines

https://www.frontiersin.org/articles/10.3389/fpubh.2020.00420/full

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.
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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).
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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.
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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.
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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.
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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.
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So much for the massive cost-savings of biopsychosocial disease denial. Ignore opportunity cost at great peril. Simple solutions to complex problems are almost always wrong.

Australia's GDP is ~1.7% of the world's GDP. Depending on how parity costs can be extrapolated in various economies, this would represent economic losses on the order of $800,000,000,000 ($800B) per year. Even very conservative underestimations place this at direct economic losses at well above $1 trillion per decade.

The BPS model of illness is not only a humanitarian and scientific disaster, it is also an economic one. Quite likely the most expensive failure of expertise in world history.
 
Doesn't look BPS at all, just normal health economics. I wouldn't expect BPS from this group of researchers. There looks to be a lot of interesting demographic data for people who like that sort of thing. For instance, of any criteria diagnosed, 65% were unemployed and so on.

All resource use attributed to ME/CFS was derived using a self-completed online survey. Participants were recruited from the Australian ME/CFS National Center for Neuroimmunology and Emerging Diseases (NCNED) Research Registry Survey database and a research participant network. The NCNED Research Registry Survey database and the research participant network include patients predominantly from across Australia with representation across multiple States and Territories, The registry has been built over the last eight 8 years to capture information about ME/CFS patients and healthy controls, who have participated in NCNED research and trials, have been targeted through ME/CFS advocacy networks or referred by medical professionals post diagnosis of ME/CFS.
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I don't know how reliable this network is, I guess people who have been seen by the NCNED. But it sounds decent.
 
So if I understand correctly NCNED sent online questionnaires to ME/CFS patients who were in their database because they participated in previous studies.

The first notable thing is that almost half of the 163 patients that were contacted, did not meet any of the used case definitions (Fukuda, CCC, and ICC). That could mean that people easily pop in and out of case definitions depending on the time that you assess them (or that there was a problem with the online assessment).

The online questionnaire asked about the economic impact of ME/CFS. Of the 85 patients who participated the total average annual cost per person was estimated at $75,697. Most of the costs were borne by the patient ($71,215), compared to healthcare costs borne by the government ($4,482). The vast majority of the cost came from lost employment from patients ($48,757) and carers ($3,918).

The authors then assumed a prevalence of 0.76% which isn't based on Australian data but a figure proposed by a meta-analysis of ME/CFS prevalence. That assumption gives an estimated 191,544 Australians with ME/CFS resulting in a total economic costs of $14,499 million per year. This is much higher than previous estimates.

One big issue is selection bias - those patients who are seen in tertiary care might have higher economic costs (more lost income) than other ME/CFS patients. If I remember correctly previous estimates in the US were based on community-based samples.
 
Michiel Tack said:
The first notable thing is that almost half of the 163 patients that were contacted, did not meet any of the used case definitions (Fukuda, CCC, and ICC). That could mean that people easily pop in and out of case definitions depending on the time that you assess them (or that there was a problem with the online assessment).
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Yeah this is a bit confusing, how did they get in the patient registry if about half don't meet any of the me/cfs criteria? Because patient registry data was used to clasify the patient.

ME/CFS diagnostic criteria classification was undertaken using Research Registry Survey responses to ascertain whether participants met the Fukuda, ICC, CCC definitions. Classification analysis was supported by the second author of the paper, who is a specialist in ME/CFS diagnosis and along with methodologies used in other peer-reviewed studies (12).
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Also, only 15 met all 3 criteria, so it's kind of a troubling result. It also might be a problem with the registry, maybe their is lax, non-criteria entry into the registry, but for actually study recruitment a researcher does the specific diagnoses. As they did with this study.

Normally you might say that a registry like this would bias patients more willing to participate in studies, and therefore possibly healthier. Willing to drive to the clinic and so, but it's also true that worse patients might be referred to tertiary care and also patients with higher eduction or incomes might more easily get referred to a clinic like this.
 
dreampop said:
Yeah this is a bit confusing, how did they get in the patient registry if about half don't meet any of the me/cfs criteria? Because patient registry data was used to clasify the patient.
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Unfortunately we don’t know about the trials involved in recruiting people to the registry.

If my memory serves me correctly, when I was recruited to the FINE trial late on in the study, they were getting desperate to recruit enough patients. I was recruited in a GP trawl beyond their initial geographical area, but presumably desperate researchers might also look at patients with looser diagnostic criteria.

Regardless of this it seems strange to use a research patient registry to select patients for this specific study, because by its nature it selects an unrepresentative sample, certainly it excludes those more severely effected that would not be well enough to participate in research who might be expected to be associated with the greatest economic cost. (Though having said that how many people with severe ME would visit their GP as often as 12.1 times in a year, my current average seeing my GP is less than 0.5 per year.)

Having said that, this is important data to have, even if it is imperfect. What we need to know is that do its defects mean it will produce over or underestimates of the economic cost of ME/CFS.
 
I received an email invitation from them asking me to complete the questionnaire. The reason I was on their database was that I took part in some of their research when I was living in Australia.

From memory they had previously had real difficulty getting patient for research in their location. This may have changed since they have had conferences and opened a clinic. From memory the local support group I belonged to close to them supplied some patients for previous research. We were certainly asked by a group member who was taking part.

As this was an online survey they may have a bigger list of people in Australia who have been in touch and these may or may not be be people who have been seen at their clinic.
 
ukxmrv said:
As this was an online survey they may have a bigger list of people in Australia who have been in touch and these may or may not be be people who have been seen at their clinic.
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Yes, I believe they canvassed responses from people across Australia who had expressed interest in taking part in their research.
 
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