Laurey Brown, Katie Hoffman, Chiara Corbo-Galli, Siyuan Dong, Katelyn Zumpf, Christa Weigel, Colleen Blomgren, Hannah Munson, Jessa Bidwell, Vamshi Rao, Nancy L Kuntz, Abigail Schwaede, Kristin J Krosschell
Background : Spinal muscular atrophy (SMA) has a remarkable impact on function and participation. Subsequently, the caregivers of individuals with SMA are impacted as well. Providers and the SMA community should be aware of the presence of and likely expectations for the existence of caregiver burden. Methods : The Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) quantifies caregivers' perceptions of function and quality of life pertaining to time, finance and emotion. Analyses were conducted among SMA types and ambulatory and ventilatory status...
February 6, 2024: Journal of Clinical Medicine