Neuromyelitis optica spectrum disorder
Patient experience and quality of life
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Abstract
Objective To gain insights into NMOSD disease impact, which may negatively affect QoL of patients, their families, and social network.
Methods The current study used validated instruments to assess physical, emotional, and socioeconomic burden of NMOSD on QoL among 193 patients.
Results A majority of patients reported an initial diagnosis of a disease other than NMOSD. Overall, two-thirds of patients reported NMOSD as having a strong negative impact on physical health (Short Form-36 [SF-36] score 27.1 ± 39.1), whereas emotional well-being was relatively unimpaired on average (SF-36 score 54.0 ± 44.9). A subset of patients reported having the highest category of emotional health despite worse physical health or financial burden, suggesting psychological resilience. Pain (r = 0.61) and bowel/bladder dysfunction (r = 0.41) imposed the greatest negative physical impact on overall QoL. In turn, ability to work correlated inversely with worsened health (r = −0.68). Increased pain, reduced sexual function, inability to work, and reduced QoL had greatest negative impacts on emotional well-being. Dissatisfaction with treatment options and economic burden correlated inversely with QoL.
Conclusions Collectively, the current findings advance the understanding of physical, emotional, social, and financial tolls imposed by NMOSD. These insights offer potential ways to enhance QoL by managing pain, enhancing family and social networks, and facilitating active employment.
Glossary
- ANOVA=
- analysis of variance;
- AQP4=
- aquaporin-4;
- GJCF=
- Guthy-Jackson Charitable Foundation;
- MOG=
- myelin oligodendrocyte glycoprotein;
- NMO=
- neuromyelitis optica;
- NMOSD=
- neuromyelitis optica spectrum disorder;
- QoL=
- quality of life;
- SF-36=
- Short Form-36
Footnotes
Go to Neurology.org/NN for full disclosures. Funding information is provided at the end of the article.
The Article Processing Charge was funded by The Guthy-Jackson Charitable Foundation.
- Received January 11, 2019.
- Accepted in final form April 8, 2019.
- Copyright © 2019 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.
This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND), which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.
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