A single relapse induces worsening of disability and health-related quality of life in patients with neuromyelitis optica spectrum disorder

Berthele, A; Levy, M; Wingerchuk, DM; Pittock, SJ; Shang, S; Kielhorn, A; Royston, M; Sabatella, G; Palace, J

Journal article

A single relapse induces worsening of disability and health-related quality of life in patients with neuromyelitis optica spectrum disorder

Abstract:: Neuromyelitis optica; Shared decision-making; Therapeutic inertiaNeuromielitis óptica; Toma de decisiones compartida; Inercia terapéuticaNeuromielitis òptica; Presa de decisions compartida; Inèrcia terapèuticaIntroduction and objective: Limited information is available on how neurologists make therapeutic decisions in neuromyelitis optica spectrum disorder (NMOSD), especially when new treatments with different mechanisms of action, administration, and safety profile are being approved. Decision-making can be complex under this uncertainty and may lead to therapeutic inertia (TI), which refers to lack of treatment initiation or intensification when therapeutic goals are not met. The study aim was to assess neurologists’ TI in NMOSD. Methods: An online, cross-sectional study was conducted in collaboration with the Spanish Society of Neurology. Neurologists answered a survey composed of demographic characteristics, professional background, and behavioral traits. TI was defined as the lack of initiation or intensification with high-efficacy treatments when there is evidence of disease activity and was assessed through five NMOSD aquaporin-4 positive (AQP4+) simulated case scenarios. A multivariate logistic regression analysis was used to determine the association between neurologists’ characteristics and TI. Results: A total of 78 neurologists were included (median interquartile range [IQR] age: 36.0 [29.0–46.0] years, 55.1% male, median [IQR] experience managing demyelinating conditions was 5.2 [3.0–11.1] years). The majority of participants were general neurologists (59.0%) attending a median (IQR) of 5.0 NMOSD patients (3.0–12.0) annually. Thirty participants (38.5%) were classified as having TI. Working in a low complexity hospital and giving high importance to patient’s tolerability/safety when choosing a treatment were predictors of TI. Conclusion: TI is a common phenomenon among neurologists managing NMOSD AQP4+. Identifying TI and implementing specific intervention strategies may be critical to improving therapeutic decisions and patient care.The author(s) declare financial support was received for the research, authorship, and/or publication of this article. The study was funded by the Medical Department of Roche Farma Spain (SL43671). The funding source had no role in the design of this study, data analysis and interpretation, review and approval of the manuscript or the decision to submit for publication

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Peer review status:: Peer reviewed

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APA Style

Berthele, A., Levy, M., Wingerchuk, D. M., Pittock, S. J., Shang, S., Kielhorn, A., Royston, M., Sabatella, G., & Palace, J. (2023). A single relapse induces worsening of disability and health-related quality of life in patients with neuromyelitis optica spectrum disorder. Frontiers in Neurology, 14, 1099376–1099376.

MLA Style

Berthele, A, et al. “A Single Relapse Induces Worsening of Disability and Health-Related Quality of Life in Patients with Neuromyelitis Optica Spectrum Disorder.” Frontiers in Neurology, vol. 14, 2023, pp. 1099376–76.

Chicago Style

Berthele, A, M Levy, DM Wingerchuk, et al. 2023. “A Single Relapse Induces Worsening of Disability and Health-Related Quality of Life in Patients with Neuromyelitis Optica Spectrum Disorder.” Frontiers in Neurology 14: 1099376–76.
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