A survey showed that 69% of patients with neuromyelitis optica spectrum disorders reported lost income because of hospital visits related to disease relapse.
Shamik Bhattacharyya, MD
In a recent survey study of 103 adults, findings demonstrated a high economic burden for patients of relapse events from neuromyelitis optica spectrum disorders (NMOSD) as participants experienced significant healthcare costs.1 The data provided additional information to the limited information about the personal costs of care for patients with this condition.
Patients reported no out-of-pocket costs for 48% of direct costs. The mean cost for patients with each relapse event was $3326 USD (95% CI, 2378-4274) for 52% of events reported. In addition, patients reported indirect costs for 26% of visits, averaging with the cost of $1907 USD (95% CI, 1159-2655) per visit. Notably, 69% of patients reported having a loss of income because of hospital visitations.
Senior author Shamik Bhattacharyya, MD, assistant professor of neurology at Brigham and Women's Hospital, and colleagues wrote, “only [one] quarter of our sample reported indirect costs incurred for relapse events, which is low and may be due to the open-ended nature of our survey. A large majority of our sample reported lost income due to relapse events, which we did not quantify but could represent the most significant indirect cost to patients with NMOSD.”1
The study enrolled adult patients (85% women, 15% men; 69% US residents; 79% White, 15% Black, 9% Asian, 13% Hispanic or Latino/a) with NMOSD about their personal economic burden of NMOSD emergency department visits and hospitalizations because of relapse events. Average occurrence of relapse events was 5.3 over the prior 3 years. Patients were recruited between August and September 2021 from NMOSD-related Facebook groups. Participants completed the 20-minute survey remotely on an online platform called Qualtrics. The survey queried patients on demographic, social, and clinical characteristics as well as quantity and outcomes NMOSD related to emergency department visits and hospitalizations over the past 3 years.
Primary outcomes of the study were direct (out-of-pocket medical) and indirect (eg, childcare and housework) costs. Median household income was $83,000 USD. Of the respondents, 48% had completed a college level of education or beyond and only 4% had attained less than a high school level of education. Average NMOSD disease duration was 3.1 years (range ≤1 to 9 years; SD, 2.4 years).
The average reported number of emergency visits related to NMOSD was 3.6 visits (SD, 4.1), and average number of hospital admissions including inpatient rehabilitation stays was 1.7 visits (SD, 2.7) over the past 3 years. The mean duration of hospital admission was 15 days. Participants reported that those hospitalizations were for new relapse events in 66% of cases, 18% of cases for NMOSD treatment, and 16% of cases for complications of prior relapses.
Patients reported personal cost for NMOSD over the past 3 years including direct and indirect reported costs of all emergency visits and spatializations (accounting visits of no out-of-pocket or indirect costs incurred) was $9201 USD (95% CI, 6206-12,195). Notably in relation to 59% of hospitalizations, patients experienced financial hardships and 69% of participants lost income from not working because of hospital visits.
Bhattacharyya et al noted, “These economic burdens are in addition to the other NMOSD-related healthcare costs patients incur outside of relapses. Most notably, several studies report that the largest economic burden to patients with NMOSD is due to the cost of prescriptions for long-term immunosuppressants, which account for up to 60% of costs incurred to patients.”2,3
One significant limitation of the survey includes the self-reporting of data, such as NMOSD diagnosis, emergency visits, hospitalizations, and related costs, as well as the sample convenience for recruitment through a social media platform. Additionally, the sample was relatively high-income participants and consisted of primarily White individuals. Definitions of direct and indirect costs might also have underestimated the true costs for patients. Also, investigators noted that they did not have data on insurance status or treatment regimens for patients.
“Future work should also identify and support subgroups of people living with NMOSD (e.g., patients on specific immunosuppressing therapies) who experience higher economic burden due to relapses,” Bhattacharyya et al noted.1 “As such, future research could prioritize exploring the unique characteristics and situations of the economic burden of NMOSD to populations with fewer resources.”
