The Impact of Spinal Muscular Atrophy (SMA) Type 1 on Caregivers in Taiwan: Results of a Global Survey

OBJECTIVES: Data on the impact of costs associated with care for SMA type 1 patients are limited. We sought to describe sociodemographics, health care resource use (HCRU), and time costs for patients with SMA type 1 in Taiwan.

METHODS: An online survey was disseminated to voluntary non-health care provider (HCP) caregivers in Taiwan from May 2022 to December 2022. The survey collected data on HCRU from the caregivers’ perspective, as well as time spent as a caregiver and out-of-pocket costs for caring for patients with SMA type 1.

RESULTS: Sixteen caregivers (mean age, 40.6 years) managing 16 patients with SMA type 1 responded. In 11 of 16 cases (68.8%), the respondent was the patient’s primary or co-primary caregiver. Mean patient care time was 79.4 hours/week. Caregivers reported entertainment and feeding as their most time-consuming activities. Of the 16 patients, five (31.2%) had a caregiver who stopped working to provide care; four (25%) had a caregiver who reduced their working hours (median reduction, 30 hours/week); and one (6.2%) had a caregiver who changed jobs. Ten of 16 (62.5%) caregivers reported impact on income, and, within the last 6 months, eight of 11 (72.7%) caregivers took days off from work for caregiving (mean, 5.4 days). Most caregivers consulted at least one HCP during the last 6 months for their patient with SMA type 1, and five patients (45.5%) had ≥1 overnight hospitalizations, excluding SMA-related surgeries.

CONCLUSIONS: Caregivers of SMA type 1 patients in Taiwan reported a substantial impact on their time for providing care, as well as financial and employment status. Direct/indirect societal burdens established from HCRU and lost productivity associated with SMA type 1 creates the need to understand the impact of early diagnosis and access to disease-modifying therapies on the severity of these burdens and associated costs.