"Quality of life of patients with high grade glioma: The development of the PDQ-HC screening list for the need for psychosocial care."

Patients with high grade glioma experience psychosocial problems, which reduce
quality of life. There is no screening instrument available for this group to
register this uniformly in practice. Therefore, referring to the proper health
care worker for psychosocial problems remains difficult. With this study, we
aim to determine the psychosocial determinants of quality of life of patients
with high grade glioma. Based on this, we hope to develop a screening
instrument which can map the need for care. This instrument may include a
decision diagram, suited for the individual needs of the patient.

This research aims to improve quality of life of patients with high grade
glioma. Psychological variables which determine quality of life in this group
will be determined. By means of collecting data on several questionnaires about
concerns of this group a screening instrument may be developed, named the
PDQ-HC (Head cancer), analogous to the PDQ-BC. Apart from generic questions,
there is attention for disease specific questions distinguishing the PDC-HC
from the PDQ-BC. Aim of this screening instrument is making an inventory of
psychosocial problems in a uniform and early manner, making a specific referral
possible. Specific psychosocial complaints can be signalled faster in a
structured manner, and can be reduced where possible. In this way, patients and
family need not be in a disproportionate emotional crisis for more time than
necessary.

prospective follow up study

Around diagnosis the MMSE will be administered to patients. This will take
approximately 15 minutes. Also, patiens and partners will be asked to fill in
some questionnaires around diagnosis, and 3, 6, 12, 18, and 24 months later.
This takes approximately 1 hour each time. If the research project raises any
questions, patients can contact GM Nefs, neuropsychologist i.o, and R. Van
Helvert, nursing specialist neuro-oncology.