Change in disability profile and quality of life in multiple sclerosis patients: a five-year longitudinal study using the Multiple Sclerosis Impact Profile (MSIP)

Abstract

Link to publication in University of Groningen/UMCG research database Citation for published version (APA): Wynia, K., van Wijlen, A. T., Middel, B., Reijneveld, S. A., & Meilof, J. F. (2012). Change in disability profile and quality of life in multiple sclerosis patients: a five-year longitudinal study using the Multiple Sclerosis Impact Profile (MSIP). Multiple sclerosis journal, 18(5), 654-661. https://doi.org/10.1177/1352458511423935 Copyright Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).Take-down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum. MULTIPLE SCLEROSIS MSJ JOURNAL IntroductionMultiple Sclerosis (MS) is a chronic neurological disease of the central nervous system and is potentially the most common cause of neurological disability in young adults. 1 The disease course is characterized by either acute periods of deterioration or relapses (about 85% of patients initially), or gradual progressive deterioration of neurological functioning, or combinations of the two.Understanding the course of chronic diseases is a recurrent objective in research. Natural history studies, for example, are follow-up studies that provide the strongest evidence. These studies thoroughly examine the course of the disease among a large number of patients for a period of about 30-40 years. Natural history studies in MS have Objectives: To examine the course of a broad spectrum of MS-related disabilities and quality of life (QOL) in relation to disease severity, and responsiveness of the Multiple Sclerosis Impact Profile (MSIP). Methods: The mortality rate was calculated after checking the national population register for vital status of the initial cohort. We performed a longitudinal study among 245 patients with MS attending the Groningen MS Center in the Netherlands. We assessed these patients in 2004 and 2009 using a postal survey including the MSIP to evaluate disabilities, the World Health Organization Quality of Life-Abbreviation version (WHOQOL-BREF) to evaluate QOL, and the ambulation question of the Expanded Disability Status Scale (EDSS) to evaluate disease severity. Responsiveness of the MSIP was estimated using standardized response mean (SRM). Results: Increase of disability in the MSIP disability domains and loss of QOL were most prevalent and pronounced in patients with EDSS 0 to < 4.5 in 2004. MSIP and QOL scores were remarkably stable in the higher disease severity groups. Mortality rates were highest (24%) in patients with EDSS ≥ 7 to < 10 in 2004. SRM indices for the MSIP ra...

Quality of life in Polish patients with multiple sclerosis

“…It has been shown that even in the early stage of disease, patients' QoL is significantly reduced [17]. According to some observations, it seems QoL worsens the most at the beginning of MS, immediately after diagnosis [29]. But most studies show that QoL gradually deteriorates with increased disability [16,30].…”

Clinical effectiveness and cost-effectiveness of beta-interferon and glatiramer acetate for treating multiple sclerosis: systematic review and economic evaluation

“…Surveys with an average age of respondents of 50 years have noted that most patients are not working, 96,109 with most cases of early or partial retirement the result of MS. 98,109 In a study of 305 patients in England in the 1980s, 27% of patients reported a decreased standard of living because of employment changes and care costs and 36% of carers interviewed had also had their career impacted. 109 Lost employment is estimated to currently account for 34-40% of the total cost of MS. 105,106 Patient expectations and perceptions of disease…”

Predictors of quality of life in patients with relapsing-remitting multiple sclerosis: A 2-year longitudinal study

“…Initial stage of MS [15,16], change in Expanded Disability Status Scale (EDSS) score [17], fatigue and depression [18], cognition [18], and immunomodulating treatments [19] have already been found to be QoL predictors.…”

“…Although important information is provided by these previous studies, their potential weaknesses include small sample size [18], heterogeneity of the sample (i.e., including all MS subtypes), short follow-up time [19,20], use of only selfassessment clinical evaluations [16], inappropriate study design (such as a randomized clinical trial) [17], and lack to simultaneously consider multiple QoL predictors [15].…”