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Published on: August 21, 2017
Neuromyelitis optica spectrum disorder: Patient experience and quality of life
Janine Beekman1, Aysha Keisler1, Omar Pedraza1
1Ipsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
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.
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