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

• Những tác giả chính: Heike Kölbel (Tác giả), Laura Modler (Tác giả), Astrid Blaschek (Tác giả), Ulrike Schara-Schmidt (Tác giả), Katharina Vill (Tác giả), Oliver Schwartz (Tác giả), Wolfgang Müller-Felber (Tác giả)
• Định dạng: Sách
• Được phát hành: MDPI AG, 2022-11-01T00:00:00Z.
• Những chủ đề: article
• Truy cập trực tuyến: 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...