Dietitian‐Led Synchronous and Asynchronous Tele‐Nutrition in Children With Spinal Muscular Atrophy: A Three‐Arm Randomized Controlled Trial
Mücahit Muslu, Gülden Fatma GökçayABSTRACT
Introduction
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.
Methods
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.
Results
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.
Conclusion
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.