PLoS ONE (Jan 2024)

Feasibility and utility of in-home body weight support harness system use in young children treated for spinal muscular atrophy: A single-arm prospective cohort study.

  • Megan A Iammarino,
  • Lindsay N Alfano,
  • Natalie F Reash,
  • Brenna Sabo,
  • Sara Conroy,
  • Garey Noritz,
  • Madalynn Wendland,
  • Linda P Lowes

DOI
https://doi.org/10.1371/journal.pone.0300244
Journal volume & issue
Vol. 19, no. 3
p. e0300244

Abstract

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PurposeThis single-arm prospective cohort study aimed to evaluate the feasibility and utility of in-home body weight support harness system (BWSS) use in children treated for spinal muscular atrophy (SMA).MethodsIndividuals with 2 or 3 copies of SMN2 who received pharmacotherapeutic treatment, had head control, and weight ResultsAll 32 participants (2.9 (SD 1.9) yrs), improved or remained stable on all outcomes. Average reported frequency of use was 4.1(2.3) hrs/week. Controlling for other covariates, frequency of use explained over 70% of the variability in change scores. Family feedback was overwhelmingly positive.ConclusionUse of in-home BWSS is a safe, feasible and useful option to increase exercise dosage after treatment in SMA and may help optimize motor abilities.Trial registrationStudy registered with: Clinicaltrials.gov Clinicaltrials.gov identifier: NCT05715749.