Taking care of a child with spinal muscular atrophy (SMA) significantly affects several aspects of families’ lives, including finances, career choices, social life, and mental health, according to an Australian study.
The study, “Financial, opportunity and psychosocial costs of spinal muscular atrophy: an exploratory qualitative analysis of Australian carer perspectives,” was published in the British Medical Journal Open.
While advances in supportive care and equipment have improved SMA patients’ survival and quality of life, the financial burden on families and the healthcare system has increased. It is estimated that annual SMA costs are $957 million in the U.S. and €106.2 million in Germany.
But SMA costs are not limited to just healthcare expenses. High non-healthcare costs also affect caregivers’ quality of life, mainly due to caregiver burden, along with career and social limitations.
To better understand the overall burden of SMA and identify potential gaps in providing care, it is crucial to assess hidden or under-reported costs sustained by families who take care of children with SMA.
Determining the overall costs of SMA is even more relevant now that the disease has its first approved treatment —Spinraza (nusinersen) — and new treatments are likely to be approved soon. This way, more accurate comparisons can be made to guide important decisions related to treatment options and their real impact.
Australian researchers performed a retrospective qualitative analysis to evaluate the financial (direct and indirect), opportunity, social, and psychological impact associated with caring for children with SMA, from the caregiver perspective.
Direct costs referred to purchases of goods and services, indirect costs to unpaid care provided by the primary caregiver, family, and volunteers, and opportunity costs to missed career and social experiences by the caregivers.
Telephone interviews were conducted with seven mothers who were the principal caregivers of children with SMA type 2 (five children) and SMA type 3 (three children) from a single Australian pediatric neuromuscular clinic. Personal and socioeconomic information was collected.
The women who were interviewed were all married, with ages between 30 and 49 years, and the average age of their children with SMA was 6.4 years.
The themes that emerged during the interviews included increased expenses, elevated caregiving demands, limitations in their career choices and progression, social and emotional burden, and difficulties accessing funding, equipment, support, and resources.
Financial assistance from the government was reported to not cover the full costs of essential equipment, and most families relied on charities and fundraising to cover these financial gaps. The participants mentioned a constant need to redirect resources and to learn to live without certain things.
Most mothers (6 out of 7) reduced their work load or quit their jobs due to the higher demands of caregiving, which in turn reduced the family income and increased preoccupation with required medical expenses.
The all-consuming nature of caring for a child with SMA was reported to affect the physical and mental well-being of the caregivers, increasing their mental fatigue, stress, and back pain due to lifting. All participants mentioned a significant emotional burden, and most experienced less opportunity for social interaction and leisure activities.
Researchers noted that although the sample size was small, data saturation — when no new themes are emerging, and the responses get very repetitive — was reached by the fifth interview, allowing them to obtain representative conclusions.
They also noted that additional studies including male relatives and children with SMA type 1 are necessary to have a more complete understanding of these often under-reported costs.
“Including these hidden or uncounted costs is essential in understanding disease impact, providing comprehensive supportive care and informing public policy to efficiently connect families with appropriate services, equipment and resources,” the researchers wrote.