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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 professionals. RESULTS:In more than 78% of DIPG patients, problems concerning mobility, swallowing, communication, consciousness, and breathing arose during end-stage disease. Supportive drugs were widely prescribed. The use of medical aids was only documented in <15% of patients. Palliative and end-of-life care was mostly based on the health care professional's experience; only 21% of the questionnaire respondents reported to have a disease-specific palliative care guideline available. CONCLUSIONS:This research assessed the current state of palliative and end-of-life care for children with DIPG. Our results show the variability and complexity of symptoms at end-stage disease and the current lack of disease-specific guidelines for this vulnerable group of patients. This first descriptive paper is intended to act as a solid basis for developing an international clinical trial and subsequent guideline to support high-quality palliative and end-of-life care.

journal_name

Neuro Oncol

journal_title

Neuro-oncology

authors

Veldhuijzen van Zanten SE,van Meerwijk CL,Jansen MH,Twisk JW,Anderson AK,Coombes L,Breen M,Hargrave OJ,Hemsley J,Craig F,Cruz O,Kaspers GJ,van Vuurden DG,Hargrave DR,SIOPE DIPG Network.

doi

10.1093/neuonc/nov250

subject

Has Abstract

pub_date

2016-04-01 00:00:00

pages

582-8

issue

eissn

1522-8517

issn

1523-5866

pii

nov250

journal_volume

pub_type

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