Objective: To assess overall resource consumption, work capacity and quality of life of patients with multiple sclerosis in nine European countries.
Methods: Information on resource consumption related to multiple sclerosis, informal care by relatives, productivity losses and overall quality of life (utility) was collected with a standardised pre-tested questionnaire from 13 186 patients enrolled in national multiple sclerosis societies or followed up in neurology clinics. Information on disease included disease duration, self-assessed disease severity and relapses. Mean annual costs per patient (€, 2005) were estimated from the societal perspective.
Results: The mean age ranged from 45.1 to 53.4 years, and all levels of disease severity were represented. Between 16% and 29% of patients reported experiencing a relapse in the 3 months preceding data collection. The proportion of patients in early retirement because of multiple sclerosis ranged from 33% to 45%. The use of direct medical resources (eg, hospitalisation, consultations and drugs) varied considerably across countries, whereas the use of non-medical resources (eg, walking sticks, wheel chairs, modifications to house and car) and services (eg, home care and transportation) was comparable. Informal care use was highly correlated with disease severity, but was further influenced by healthcare systems and family structure. All types of costs increased with worsening disease. The total mean annual costs per patient (adjusted for gross domestic product purchasing power) were estimated at €18 000 for mild disease (Expanded Disability Status Scale (EDSS) <4.0), €36 500 for moderate disease (EDSS 4.0–6.5) and €62 000 for severe disease (EDSS >7.0). Utility was similar across countries at around 0.70 for a patient with an EDSS of 2.0 and around 0.45 for a patient with an EDSS of 6.5. Intangible costs were estimated at around €13 000 per patient.
- DMD, disease-modifying drugs
- EDSS, Expanded Disability Status Scale
- EQ-5D, EuroQol
- GDP, gross domestic product
- QALY, quality-adjusted life year
- QoL, quality of life
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Published Online First 11 May 2006
Funding: This project was supported by an unrestricted grant from BiogenIdec, Cambridge, Massachusetts, USA, and Elan Corporation, San Diego, California, USA.
Competing interests: None declared.
The following investigators or societies participated in this study. Austria—Austrian Multiple Sclerosis Society; Belgium—CU St Luc, Woluwe-Saint Lambert: Prof Christian Sindic, Dr Sophie Goffette; Centre Neurologique & Réadaptation Fonctionnelle, Fraiture: Dr D Guillaume, Dr R Reznik; MS & Revalidatiecentrum, Overpelt: Dr Luc Vande Gaer, Dr Eric de Smet; Elisabeth Ziekenhuis, Sijsele: Dr Danny Decoo; Germany—Hamburg: Dr Wolfgang-Gerhard Elias; Quellenhof Neurologisches Rehabilitationszentrum, Bad Wildbad: Prof Peter Flachenecker; Kaltenkirchen: Dr Matthias Freidel; Marianne-Strauss-Klinik, Berg: Prof Nicolaus König; Universitätsklinikum Essen, Essen: Prof Volker Limmroth; Barsinghausen: Dr Elmar Straube; Italy—University of Genvoa, Genova: Dr Antonio Uccelli; Associazione Italiana Sclerosi Multipla (AISM): Prof Mario A Battaglia; ADIS International, Milano: Dr Carlo Lucioni; The Netherlands—VU Medical Center, Amsterdam: Prof Chris Polman, Dr Bernard Uitdehaag; MS Center Nijmegen: Dr Peter JH Jongen; Maasland Ziekenhuis, Sittard: Dr HW Anten; Spain—Hospital Virgen de la Macarena, Sevilla: Dr Guillermo Izquierdo; Biogen Idec Iberia, S.L., Madrid: Dr Olga Sánchez-Soliño, Dr Juan Pérez Miranda; PORIB, Madrid: Dr Miguel Angel Casado; Asociación Española De Esclerosis Múltiple; Sweden—Karolinska Hospital Stockholm: Prof Sten Fredrikson; Neurologisk Handikappades Riksförbund-Annica Bernehjält; Switzerland—Schweizerische MS Gesellschaft, Zurich: Dr Judy Lutz; UK—Heron Evidence Development Ltd, Letchworth: Dr David Tyas, Mr John Kerrigan; Multiple Sclerosis Trust.
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