Parental Burden and Quality of Life in 5q-SMA Diagnosed by Newborn Screening

• Main Authors: Heike Kölbel (Author), Laura Modler (Author), Astrid Blaschek (Author), Ulrike Schara-Schmidt (Author), Katharina Vill (Author), Oliver Schwartz (Author), Wolfgang Müller-Felber (Author)
• Formato: Livro
• Publicado em: MDPI AG, 2022-11-01T00:00:00Z.
• Assuntos: article
• Acesso em linha: Connect to this object online.

The aim of this study was to assess the psychosocial burden in parents of children with spinal muscular atrophy (SMA), detected by newborn screening (NBS), for which first pilot projects started in January 2018 in Germany. The survey, performed 1-2 years after children's diagnosis of SMA via NB...