Impact of Neuromyelitis Optica Spectrum Disorder on Quality of Life from the Patients’ Perspective: An Observational Cross-Sectional Study

Meca-Lallana, José; Gómez-Ballesteros, Rocío; Pérez‐Miralles, Francisco; Forero, Lucía; Sepúlveda, María; Calles, Carmen; Martínez-Ginés, María Luisa; Suárez, I.; Boyero, Sabas; Romero-Pinel, Lucía; Sempere, Ángel P.; Meca-Lallana, Virginia; Querol, Luís; Costa‐Frossard, Lucienne; Prefasi, Daniel; Mauriño, Jorge

doi:10.1007/s40120-022-00356-6

Cited by 9 publications

(9 citation statements)

References 43 publications

(49 reference statements)

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“…Our study is consistent with others who have identified a high unemployment rate and limited full‐time employment among study participants with NMOSD. Prior work on NMOSD found 11% to 35% of participants from the United States, Spain, and United Kingdom were employed 12–14 . However, these prior studies did not specifically aim to characterize employment of NMOSD patients and had study populations that were about 6 years older on average.…”

Section: Discussionmentioning

confidence: 99%

“…Prior work on NMOSD found 11% to 35% of participants from the United States, Spain, and United Kingdom were employed. 12 , 13 , 14 However, these prior studies did not specifically aim to characterize employment of NMOSD patients and had study populations that were about 6 years older on average. This inevitably increased the number of retired participants included.…”

Section: Discussionmentioning

confidence: 99%

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Impact of neuromyelitis optica spectrum disorder on employment and income in the United States

Hjerthen,

Trápaga Hacker,

Meador

et al. 2024

Ann Clin Transl Neurol

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Background and ObjectivesWe aim to characterize the sociodemographic and clinical factors associated with loss of jobs, income, and work hours in people with neuromyelitis optica spectrum disorder (NMOSD) in the United States.MethodsA REDCap‐based survey was administered to working‐age NMOSD patients (18–70 years old) querying demographic information, symptoms, immunosuppression, work hours, income, and caregiver work (11/2022–07/2023). Regression models were developed using MATLAB.ResultsOf 127 participants (97 female; 55% AQP4‐antibody, 19% MOG antibody; 69% Caucasian, 7% Hispanic), with an average diagnosis age of 38.7 years, average disease duration of 6.4 years, mean 3.1 attacks, and 94% of whom were treated with immune system‐directed therapy (53% rituximab, 8% satralizumab, 7% eculizumab, 6% mycophenolate mofetil, 4% inebilizumab, 2% azathioprine, 10% IVIg, 10% other), 56% lost a job due to NMOSD. Employment decreased 12% (80% pre‐ to 68% post‐diagnosis). Thirty‐six percent of participants said they no longer worked outside the home. Significant predictors for post‐NMOSD diagnosis employment status included younger age, lower pain level, no walking aids, and having a job prediagnosis.Sixty‐eight percent of those employed prediagnosis reduced their work hours, dropping an average of 18.4 h per month since being diagnosed (±10.1 h). Average annual income grew slowly at $1998 during the average 6.4 years of disease duration (14% of the value predicted by the U.S. Bureau of Labor Statistics). Sixty percent of participants had a regular unpaid caregiver; 34% of caregivers changed their work hours or job to help manage NMOSD.DiscussionWe provide a structured analysis of the impact of NMOSD on employment, work hours, and income in the United States, demonstrating its major effect on the livelihoods of patients and their caregivers.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Impact of neuromyelitis optica spectrum disorder on employment and income in the United States

Hjerthen,

Trápaga Hacker,

Meador

et al. 2024

Ann Clin Transl Neurol

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“…However, there is no clear consensus on how relapse severity is defined in clinical practice and current mildness does not necessary reflect the same in subsequent relapses, the prevention of all relapses being the therapeutic goal regardless of their severity ( 6 , 7 , 38 , 39 ). In fact, patients describe disease stability as the absence of any relapse, since they focus on the impact relapses have on daily life and wellbeing ( 40 , 41 ). Thus, the relapsing nature of the disease together with the importance of a patient-centered approach with shared decision-making should lead to a shift in the treatment paradigm to early use of high-efficacy therapies when treating this condition, as it is evolving in the MS field ( 42 ).…”

Section: Discussionmentioning

confidence: 99%

Therapeutic inertia in the management of neuromyelitis optica spectrum disorder

Cobo-Calvo,

Gómez-Ballesteros,

Orviz

et al. 2024

Front. Neurol.

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Introduction and objectiveLimited 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.MethodsAn 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.ResultsA 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.ConclusionTI 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.

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“…Depression and anxiety are common among individuals with NMOSD, with 30% to 50% endorsing clinically significant depressive symptoms [7][8][9][10] and 33% endorsing anxiety [11]. NMOSD patients are twice as likely to experience Major Depressive Disorder and high suicidal risk, as compared with patients with Multiple Sclerosis [9].…”

Section: Introductionmentioning

confidence: 99%

The psychological burden of NMOSD – a mixed method study of patients and caregivers

Esiason,

Ciesinski,

Nurse

et al. 2024

PLoS ONE

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Neuromyelitis optica spectrum disorder (NMOSD) is an inflammatory disorder of the central nervous system with common symptoms of rapid onset of eye pain, loss of vision, neck/back pain, paralysis, bowel and bladder dysfunction and heat sensitivity. The rare, unpredictable, and debilitating nature of NMOSD constitutes a unique psychological burden for patients and their caregivers, the specific nature and extent of which is not yet known. This mixed methods study, informed by both quantitative and qualitative data collected via self-report measures, focus groups, and in-depth interviews, aims to investigate and understand the psychological burden of patients with NMOSD and their caregiver/loved ones, so as to inform a specialized intervention. 31 adults living with NMOSD and 22 caregivers of people with NMOSD in the United States and Canada, recruited from NMOSD patient advocacy groups, social media groups, and through word of mouth from other participants, completed a battery of standardized self-report measures of anxiety, depression, trauma, cognitive fusion, valued living, and coping styles. Semi-structured focus group sessions were conducted via HIPAA-compliant Zoom with 31 patients, and separate focus groups were conducted with 22 caregivers. A subset of these samples, comprised of 16 patients and 11 caregivers, participated in individual semi-structured interviews, prioritizing inclusion of diverse perspectives. Descriptive statistics and bivariate correlations were run on quantitative self-report data using SPSS [Version 28.0.1]; data were stored in REDCap. Reflexive thematic analysis was employed regarding qualitative individual interview data. The majority of patients reported experiencing anxiety, depression, cognitive fusion, over-controlled coping, and lack of values-based living. Caregivers also reported heightened anxiety, cognitive fusion, and over-controlled coping, although they did not endorse clinically significant depression. Patient and caregiver degree of anxiety and of overcontrolled coping were both strongly positively correlated, likely affecting how both parties manage NMOSD-related stressors, both individually and as a dyad. Patients reported more anxiety, depression, psychological inflexibility, and lack of values-based living, compared with caregivers. Patient and caregiver narrative themes included mistrust of medical professionals, lack of support immediately following diagnosis, changes in relationships, deviation from values-based living, internalization of feelings, and avoidant coping strategies to manage the psychological burden of NMOSD. A novel mental health intervention targeting the specific psychological burden of life with NMOSD is proposed.

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Impact of Neuromyelitis Optica Spectrum Disorder on Quality of Life from the Patients’ Perspective: An Observational Cross-Sectional Study

Cited by 9 publications

References 43 publications

Impact of neuromyelitis optica spectrum disorder on employment and income in the United States

Impact of neuromyelitis optica spectrum disorder on employment and income in the United States

Therapeutic inertia in the management of neuromyelitis optica spectrum disorder

The psychological burden of NMOSD – a mixed method study of patients and caregivers

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