Social economic costs, quality of life and experience in multiple sclerosis patients and their caregivers: the IMPrESS (International MultiPlE SclerosiS) survey
Author(s): ,
M Tinelli
London School of Economics, London, United Kingdom
P Kanavos
London School of Economics, London, United Kingdom
J Mossman
European Brain Council, Brussels, Belgium
ECTRIMS Online Library. Tinelli M. Sep 15, 2016; 146212; P372
Michela Tinelli
Michela Tinelli

Abstract: P372

Type: Poster

Abstract Category: Clinical aspects of MS - Economic burden

Background: Multiple-sclerosis (MS) is the most common cause of disability among central-nervous-system (CNS) diseases. The available data provide limited information on the impact and burden of MS as experienced by people living with MS (PwMS)/caregivers. If decisions on MS management and treatment availability are to reflect patient needs, international evidence to capture the full picture of the multiple domains of MS burden is needed.

Objectives: To assess and compare the costs, health-related-quality-of-life (HRQoL), and experience reported by people living with MS/caregivers across international settings.

Methods: Information from patients/caregivers will be collected through an anonymous online survey. Participation is open to adult MS/caregivers. The study will be available in fifteen countries in Europe and overseas. Individuals will be enrolled through MS-societies and clinics. The survey will capture data on direct and indirect costs, patients" and caregivers" HRQoL (EuroQol-5D), patients" disability (Barthel-Index), burden among caregivers (Zarit-Burden-Interview), participants" experience, as well as demographic variables, and disease information. The societal, HRQoL and economic impact of MS management will be evaluated across countries.

Results: PWMS already replied from France (n=97), USA (n=70), Romania (n=44), UK (n=25) and Germany (n=10). Total average annual PWMS costs were €40,313; €20,631 were associated with direct medical costs (medicines, consultations, hospitalisations), followed by indirect costs (loos of productivity, €16,061) and direct non-medical costs (caregiver costs, €2,127). The proportion of indirect costs became more significant as the level of disability increased. The average utility value reported was 0.60 (60% of perfect health), with a loss of 25% compared with the general population. Cost and utilities varied across healthcare systems and types of MS. 22% (12/54) of the responses already available from the caregivers were suitable for preliminary analysis. Caregiver costs related to productivity losses (€31,000) were about double the cost reported by PWMS, whereas they reported better utility compared with PWMS (70% vs. 60% of perfect health). Both PWMS/caregivers reported a mild level of discomfort/disability. Their experience of MS care varied across healthcare systems.

Conclusion: Results will identify the impact of MS as experienced by PwMS/caregivers and may be used to inform the development of future services.

Disclosure: The project was funded by an unrestricted educational grant from Roche.

Dr Michela Tinelli is assistant professorial research fellow, London School of Economics (LSE) and associate researcher LSE Consulting.

Dr Panos Kanavos is Reader in International Health Policy in the Department of Social Policy, LSE and Programme Director of the Medical Technology Research Group (MTRG) at LSE Health.

MS Jean Mossman is a healthcare consultant with an honorary role at the LSE, a volunteer with the European Brain Council, and working with patient organisations; she currently consults for the following pharma companies: Bayer, Celgene, Novartis and Roche in relation to patient priorities in a number of disease areas.

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