Palliative and end-of-life care for children with diffuse intrinsic pontine glioma: results from a London cohort study and international survey

Date
2016
Author
Kaspers, Gertjan J. L.
Coombes, Lucy
CRUZ, Ofelia
van Vuurden, Dannis G.
Hargrave, Darren R.
van Zanten, Sophie E. M. Veldhuijzen
van Meerwijk, Charlotte L. L. I.
Jansen, Marc H. A.
Twisk, Jos W. R.
ANDERSON, Anna-Karenia
BREEN, Maggie
Hargrave, Olivia J.
Hemsley, June
Craig, Finella
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Abstract
Background. More than 90% of patients with diffuse intrinsic pontine glioma (DIPG) will die within 2 years of diagnosis. Patients deteriorate rapidly during the disease course, which severely impairs their quality of life. To date, no specific research on this clinically important subject has been conducted. This study aimed to compile an inventory of symptoms experienced, interventions applied, and current service provision in end-of-life care for DIPG.
URI
http://hdl.handle.net/20.500.12627/106996
https://doi.org/10.1093/neuonc/nov250
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