TY - JOUR

T1 - The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE)

AU - Pheby, Derek F.H.

AU - Araja, Diana

AU - Berkis, Uldis

AU - Brenna, Elenka

AU - Cullinan, John

AU - de Korwin, Jean-Dominique

AU - Gitto, Lara

AU - Hughes, Dyfrig

AU - Hunter, Rachael M.

AU - Trépel, Dominic

AU - Wang-Steverding, Xia

PY - 2020/4/7

Y1 - 2020/4/7

N2 - We have developed a Europe-wide approach to investigating the economic impact of ME/CFS, facilitating acquisition of information on the economic burden of ME/CFS, and international comparisons of economic costs between countries. The economic burden of ME/CFS in Europe appears large, with productivity losses most significant, giving scope for substantial savings through effective prevention and treatment. However, economic studies of ME/CFS, including cost-of-illness analyses and economic evaluations of interventions, are problematic due to different, arbitrary case definitions, and unwillingness of doctors to diagnose it. We therefore lack accurate incidence and prevalence data, with no obvious way to estimate costs incurred by undiagnosed patients. Other problems include, as for other conditions, difficulties estimating direct and indirect costs incurred by healthcare systems, patients and families, and heterogeneous healthcare systems and patterns of economic development across countries. We have made recommendations, including use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, and implementation of prevalence-based cost-of-illness studies in different countries using an agreed data list. We recommend using purchasing power parities (PPP) to facilitate international comparisons, and EuroQol-5D as a generic measure of health status and multi-attribute utility instrument to inform future economic evaluations in ME/CFS.

AB - We have developed a Europe-wide approach to investigating the economic impact of ME/CFS, facilitating acquisition of information on the economic burden of ME/CFS, and international comparisons of economic costs between countries. The economic burden of ME/CFS in Europe appears large, with productivity losses most significant, giving scope for substantial savings through effective prevention and treatment. However, economic studies of ME/CFS, including cost-of-illness analyses and economic evaluations of interventions, are problematic due to different, arbitrary case definitions, and unwillingness of doctors to diagnose it. We therefore lack accurate incidence and prevalence data, with no obvious way to estimate costs incurred by undiagnosed patients. Other problems include, as for other conditions, difficulties estimating direct and indirect costs incurred by healthcare systems, patients and families, and heterogeneous healthcare systems and patterns of economic development across countries. We have made recommendations, including use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, and implementation of prevalence-based cost-of-illness studies in different countries using an agreed data list. We recommend using purchasing power parities (PPP) to facilitate international comparisons, and EuroQol-5D as a generic measure of health status and multi-attribute utility instrument to inform future economic evaluations in ME/CFS.

KW - CFS

KW - ME

KW - cost-of-illness studies

KW - economic evaluation

KW - economic impact

KW - healthcare systems

U2 - https://doi.org/10.3390/healthcare8020088

DO - https://doi.org/10.3390/healthcare8020088

M3 - Article

VL - 8

JO - Healthcare

JF - Healthcare

SN - 2227-9032

IS - 2

M1 - 88

ER -