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

• Những tác giả chính: Silke Wiegand-Grefe (Tác giả), Anna Liedtke (Tác giả), Lydia Morgenstern (Tác giả), Antonia Hoff (Tác giả), Anikó Csengoe-Norris (Tác giả), Jessika Johannsen (Tác giả), Jonas Denecke (Tác giả), Claus Barkmann (Tác giả), Benjamin Grolle (Tác giả), Anne Daubmann (Tác giả), Karl Wegscheider (Tác giả), Johannes Boettcher (Tác giả)
• Định dạng: Sách
• Được phát hành: BMC, 2022-10-01T00:00:00Z.
• Những chủ đề: article
• Truy cập trực tuyến: 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)...