title: Costs of formal and informal home care and quality of life for patients with multiple sclerosis in sweden.
abstract: Disease progression in multiple sclerosis leads to dramatic changes in a person's ability to perform daily activities and increases reliance on external help. This study aims to describe and to estimate costs of formal/informal home care and quality of life related to multiple sclerosis. A mailed survey to a random sample of MS sufferers (n = 1500) collected data on the number of hours of home care received, type of help, productivity losses, quality of life, and disease characteristics. Costs for home care were estimated in 2012 € and factors that may influence the likelihood of getting home care were also evaluated. Formal care was given to 27% of the respondents (n = 839) at an average of 238.7 hrs/month at a mean monthly cost of €2873/person with MS. Informal care was received by 49% of the respondents at an average of 47.3 hrs/month at a mean monthly cost of €389/person with MS. Utilities across disease severity are as follows: mild MS = 0.709 (sd = 0.233), moderate MS = 0.562 (sd = 0.232), and severe MS = 0.284 (sd = 0.283). Total home care costs increased with increasing disease severity. Informal caregiving contributes significantly to MS home care in Sweden.
authors.affiliation: The Swedish Institute for Health Economics, Box 2127, 220 02 Lund, Sweden.
authors.forename: Marianne
authors.initials: M
authors.lastname: Svensson
authors.affiliation: Merck Serono Sweden, Merck AB, Box 3033, 169 03 Solna, Sweden.
authors.forename: Liberty
authors.identifier: 0000-0003-1325-5961
authors.initials: L
authors.lastname: Fajutrao
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