The objective was to evaluate the overall economic burden of spinal muscular atrophy (SMA) in Singapore. A retrospective cohort study of electronic medical records and billing data was used to obtain medical costs from public healthcare consumption. Private medical costs, nonmedical costs from transportation and hired domestic helpers, and indirect costs due to caregiver productivity loss were estimated with a cross-sectional caregiver survey. The survey also examined intangible negative and positive effects on these caregivers. All costs were adjusted to 2024 Singapore dollar (SGD). A total of 61 patients were identified in the electronic medical records, and 15 caregivers were interviewed. One caregiver who took care of two patients with SMA was excluded from the analysis. The gross cost of inpatient admission is SGD 1663.81 (standard deviation SD = 986.03) per day with mean length of stay of 6.22 days (SD = 10.89) per year, while annual mean outpatient cost is SGD 940.31 (SD = 1071.28). In addition to public healthcare services, private services incur an additional SGD 5992.35 (SD = 7557.33) per year, with fixed costs for respiratory devices and mobility aids at SGD 5677.06 (SD = 4519.57) and SGD 12,412.70 (SD = 8307.35), respectively. Nonmedical costs from hiring a domestic helper, medical-related transport, and nonmedical transport amount to SGD 7002.22 (SD = 6516.36), SGD 387.86 (SD = 196.36), and SGD 840.95 (SD = 1067.81) per annum, respectively. Paid work productivity loss is estimated at SGD 42,932.88 per family per year. Average overall economic burden is estimated at SGD 62,004.03, SGD 10,840.13, and SGD 59,629.64 per patient per year from the societal perspective, healthcare system perspective, and patient perspective, respectively. SMA poses a significant economic burden on patients, families, and the healthcare system. This study informs policy discussions for SMA management, advocating for a comprehensive, compassionate approach and societal perspective in economic evaluations to capture all costs and benefits.
Lim et al. (Fri,) studied this question.