Quantifying the economic burden to patients of relapse events from neuromyelitis optica spectrum disorders: A cross-sectional survey

Dylan R Rice; Kathryn B Holroyd; Danielle Kei Pua; Michael Levy; Farrah J Mateen; Shamik Bhattacharyya

doi:10.1016/j.msard.2023.104580

Quantifying the economic burden to patients of relapse events from neuromyelitis optica spectrum disorders: A cross-sectional survey

Mult Scler Relat Disord. 2023 Mar:71:104580. doi: 10.1016/j.msard.2023.104580. Epub 2023 Feb 15.

Authors

Dylan R Rice¹, Kathryn B Holroyd², Danielle Kei Pua³, Michael Levy¹, Farrah J Mateen¹, Shamik Bhattacharyya⁴

Affiliations

¹ Department of Neurology, Massachusetts General Hospital, Boston, MA, USA; Harvard Medical School, Boston, MA, USA.
² Department of Neurology, Brigham and Women's Hospital, Boston, MA 02115, USA; Harvard Medical School, Boston, MA, USA.
³ Department of Neurology, Brigham and Women's Hospital, Boston, MA 02115, USA.
⁴ Department of Neurology, Brigham and Women's Hospital, Boston, MA 02115, USA; Harvard Medical School, Boston, MA, USA. Electronic address: sbhattacharyya3@bwh.harvard.edu.

PMID: 36805175
DOI: 10.1016/j.msard.2023.104580

Abstract

We surveyed 103 adults (mean age 46 years; 85% female) with neuromyelitis optica spectrum disorders (NMOSD) through social media about their personal economic burden of NMOSD emergency department visits and hospitalizations ("relapse events"). The average number of relapse events over the prior 3 years was 5.3. Participants reported direct, out-of-pocket costs for 52% of events (mean cost per event 3326 USD, 95% CI [2378,4274]) and indirect costs (e.g., childcare) for 26% (mean cost per event 1907 USD, 95% CI [1159,2655]). Sixty-nine percent reported lost income due to hospital visits. Future work should identify and support subgroups with higher economic burden from NMOSD.

Keywords: Cost of illness; Emergency room; Hospitalization; Neuromyelitis optica spectrum disorders; Patient-centered outcomes; Resource utilization.

MeSH terms

Adult
Chronic Disease
Cross-Sectional Studies
Female
Financial Stress
Humans
Male
Middle Aged
Neuromyelitis Optica* / therapy
Recurrence