Dietitian-Led Synchronous and Asynchronous Tele-Nutrition in Children With Spinal Muscular Atrophy: A Three-Arm...

Evidence regarding dietitian-led tele-nutrition for children with spinal muscular atrophy (SMA) remains limited. This study evaluated the effects of synchronous and asynchronous tele-nutrition on nutrition- and feeding-related problems, anthropometric outcomes, and caregiver quality of life.

In this three-arm randomized controlled trial, 71 children with SMA and their mothers were randomized to synchronous tele-nutrition (n = 24), asynchronous tele-nutrition (n = 24), or control (n = 23); 66 completed follow-up and were included in the analysis (n = 22 per group). Primary outcomes were the investigator-developed Nutrition-related Problems Score (NPS), Tube Feeding-related Problems Score (TFPS), and Caregiver Feeding Problems Score (CFPS). Secondary outcomes included anthropometric measures, caregiver quality of life, and tele-nutrition satisfaction.

Significant group × time effects were observed for NPS (p = 0.003), TFPS (p = 0.041), and CFPS (p < 0.001). Relative to control, the difference in change in NPS was -0.86 points (95% CI -1.56 to -0.17) in the asynchronous group and -1.09 points (95% CI -1.85 to -0.33) in the synchronous group, and the corresponding differences in change in CFPS were -2.36 points (95% CI -3.37 to -1.36) and -2.86 points (95% CI -4.02 to -1.70), respectively. Neither intervention group differed from control for TFPS. The synchronous and asynchronous groups differed in the unadjusted TFPS comparison (difference in change: 0.85 points, 95% CI 0.01-1.70), but this difference was not retained after adjustment for baseline values. The two intervention models did not differ for NPS or CFPS. Group × time effects were also observed for height-for-age z score (p = 0.042), perceived health (p = 0.044), perceived quality of life (p = 0.005), and the environmental quality-of-life domain (p < 0.001), although among these only the environmental domain showed between-group differences excluding the null. Overall, 38 of 44 intervention participants (86.4%) reported being satisfied with tele-nutrition.

Dietitian-led tele-nutrition was associated with greater reductions in caregiver feeding-related problems and, to a smaller extent, child nutrition-related problems than control. The two delivery models did not differ for NPS or CFPS; the TFPS comparison was sensitive to adjustment for baseline values. Because the primary outcomes are investigator-developed measures without established thresholds for clinically meaningful change, larger, longer-term multicenter randomized controlled trials are needed to confirm these findings in SMA care.