The economic burden of CFS/ME: an initial summary of the existing evidence and recommendations for further research (Brenna & Gitto, 2017)

Dolphin · Feb 18, 2018

Free full text at: https://www.researchgate.net/publication/320111650_The_economic_burden_of_chronic_fatigue_myalgic

European Journal for Person Centered Healthcare 2017 Vol 5 Issue 3 pp 413-420

ARTICLE

The economic burden of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): an initial summary of the existing evidence and recommendations for further research

Elenka Brenna MSc PhDa and Lara Gitto MSc PhDb

a Senior Researcher, Department of Economics and Finance, Università Cattolica del Sacro Cuore, Milan, Italy
b Health Economist & Researcher, CEIS EEHTA (Economic Evaluation and Health Technology Assessment), Università di Roma “Tor Vergata”, Rome, Italy

Abstract

Background:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) describes a condition of chronic weakness that cannot be alleviated by rest and which is associated with lower quality of life and higher healthcare utilization.

In Western countries, its prevalence ranges from 0.2% to 1%.

Despite the many efforts carried out during recent decades to investigate the nature of this syndrome, there are still uncertainties and controversies with respect to its definition, diagnosis and what constitutes optimal treatment.

Some authors suggest that there may be a significant percentage of patients that are not yet diagnosed with this illness, due to the difficulty in identifying the symptoms.

Thus, the economic burden of the disease remains unclear, although it is well recognized that the costs associated with CFS are mainly related to productivity loss.

Methods:

A literature review was conducted to investigate this topic, by considering, with a chronological perspective, the most relevant contributions focussed on the economic costs and consequences of CFS/ME.

Results:

The literature review describes how the economic burden of CFS has been increasingly considered over recent decades and addresses the aspects of CFS that deserve more attention as this field of study moves forward.

Conclusion:

The economic burden of CFS has not been well studied, but recent research demonstrates an increasing interest in the direct and indirect costs of CFS on individuals and Society.

The need to establish an optimal, person-centered approach to the diagnosis, management and follow-up of CFS, is an imperative for modern medicine, given the relationship between the nature of clinical practice and the costs incurred by CFS.

Further research is required to explore this relationship and to define its policy implications.

Keywords
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), controversies, cost-effectiveness analysis, economics, person-centered healthcare, QALYs, quality of life
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Dolphin · Feb 18, 2018

Although the authors themselves may not have strong views, this mentions a lot of nonpharmacological interventions studies (e.g. on CBT) and claims they showed benefit in terms of QALYs. These are self-report measures and there is no mention that there could be problems with them.

Dolphin · Feb 18, 2018

It is here that we turn to a new approach to care which has been termed ‘person-centered healthcare’ (PCH) [cf. 41,42]. The pioneers of this approach, notably within the European Society for Person Centered Healthcare (ESPCH), describe PCH as a ‘new way of thinking and doing’ in clinical practice that elevates the standard of care from a lower common denominator to an upper numerator and which aims to re-sensitize clinicians to the fundamental ethos of medicine and healthcare, returning to them an “ambition to treat patients as persons” [42].
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I have no idea whether "person-centred healthcare" is interesting or not or what it might mean in practice. They don't give any other information on it I think.

Dolphin · Feb 18, 2018

I don't think this is a good fit for "PsychoSocial ME/CFS Research" but then I didn't seem to fit in "BioMedical ME/CFS Research" either. I think there needs to be another category for research or else they are all collapsed into one, which would be my preference.

TiredSam · Feb 18, 2018

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) describes a condition of chronic weakness that cannot be alleviated by rest and which is associated with lower quality of life and higher healthcare utilization.
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I'd like to see the evidence for this. We are often accused of wasting doctors' time, when the reality may well be that many of us are in hiding from the health service and engage as little as possible.

When I read the thread title I actually thought it might be a sympathetic paper on the economic burden to sufferers and their families, but no, it's about the cost to society, productivity, and the cost of our assumed higher healthcare utilization.

How unpleasant.

Dolphin · Feb 18, 2018

TiredSam said: ↑

When I read the thread title I actually thought it might be a sympathetic paper on the economic burden to sufferers and their families, but no, it's about the cost to society, productivity, and the cost of our assumed higher healthcare utilization.

How unpleasant.
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It talks about all sorts of economic burdens.

If we are to get public health systems to pay for treatments such as expensive drugs, it is useful to be able to argue there is an economic case for it.

TiredSam · Feb 18, 2018

Dolphin said: ↑

It talks about all sorts of economic burdens.

If we are to get public health systems to pay for treatments such as expensive drugs, it is useful to be able to argue there is an economic case for it.
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I appreciate that. I was just a little crestfallen and needed to talk about it.

Effi · Feb 18, 2018

Dolphin said: ↑

I don't think this is a good fit for "PsychoSocial ME/CFS Research" but then I didn't seem to fit in "BioMedical ME/CFS Research" either. I think there needs to be another category for research or else they are all collapsed into one, which would be my preference.
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The "economic burden" argument is something that pops up in BPS research a lot. That is how they love to describe us, a huge burden on society, and the solution is, of course, "getting them active again". Problem solved. (Not saying these researchers are BPS, but this theme makes me suspect that there might be a link there.)

Dolphin said: ↑

If we are to get public health systems to pay for treatments such as expensive drugs, it is useful to be able to argue there is an economic case for it.
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I think this could be an interesting point of view when making a case for funding.

Luther Blissett · Feb 19, 2018

TiredSam said: ↑

When I read the thread title I actually thought it might be a sympathetic paper on the economic burden to sufferers and their families, but no, it's about the cost to society, productivity, and the cost of our assumed higher healthcare utilization.

How unpleasant.
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Defective economic unit 36436/2353 (aka Luther Blissett) is no longer working 'efficiently'. The unit would require excessive 'costs' to be repaired by 'society'. Would you like to delete Y/N?

Yuck.

arewenearlythereyet · Feb 19, 2018

TiredSam said: ↑

I appreciate that. I was just a little crestfallen and needed to talk about it.
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