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

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.

Methods

We performed a retrospective cohort study of children with DIPG, aged 0-18 years, who received treatment under the care of 2 London hospitals. Symptoms, interventions, and services applied during the 12 weeks before death were analyzed. In addition, we conducted a global questionnaire-study among health care professio

SUBMITTER: Veldhuijzen van Zanten SE 

PROVIDER: S-EPMC4799684 | biostudies-literature | 2016 Apr

REPOSITORIES: biostudies-literature