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
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)...
Saved in:
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: | |
Online Access: | Connect to this object online. |
Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
Similar Items
-
Costs of health and social services use in children of parents with mental illness
by: Tamara Waldmann, et al.
Published: (2021) -
Clinical Trial Data: Both Parents Having Psychiatric Symptoms as Risk Factor for Children's Mental Illness
by: Hannah Suess, et al.
Published: (2022) -
Behçet Disease (BD) in two siblings affected with Familial Mediterranean Fever (FMF)
by: Calcagno G, et al.
Published: (2008) -
Three Indian siblings affected with progressive myoclonic epilepsy due to unverricht-Lundborg disease
by: Kavita Srivastava, et al.
Published: (2022) -
Exome sequencing is a valuable approach in critically ill patients with suspected monogenic disease: Diagnosis of X-linked centronuclear myopathy in preterm twins
by: Jessika Johannsen, et al.
Published: (2017)