Challenges of palliative care in children with inborn metabolic diseases.

Jessica I HoellJens WarfsmannFelix DistelmaierArndt BorkhardtGisela JanßenMichaela Kuhlen

Published in: Orphanet journal of rare diseases (2018)

About 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.

Keyphrases

palliative care
young adults
advance care planning
risk factors
depressive symptoms
sleep quality