Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study.
Sophie RibbersJulia WagerAlmut Hartenstein-PinterBoris ZernikowMandira ReutherPublished in: Palliative medicine (2019)
As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.