Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings

• Main Authors: Silke Wiegand-Grefe (Author), Anna Liedtke (Author), Lydia Morgenstern (Author), Antonia Hoff (Author), Anikó Csengoe-Norris (Author), Jessika Johannsen (Author), Jonas Denecke (Author), Claus Barkmann (Author), Benjamin Grolle (Author), Anne Daubmann (Author), Karl Wegscheider (Author), Johannes Boettcher (Author)
• Format: Book
• Published: BMC, 2022-10-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Abstract Background Advances in genetic and pharmaceutical technology and pediatric care have enabled treatment options for an increasing number of rare diseases in affected children. However, as current treatment options are primarily of palliative nature, the Health-Related Quality of Life (HRQoL)...