*Health-related quality of life in high-grade glioma patients and their partners in the end-of-life phase: a retrospective multi-centre analysis*

Patients with high-grade gliomas (HGG) have a dismal prognosis and cannot be
cured of their disease. Following surgery, radiation therapy and chemotherapy
they will eventually die from tumour progression. Although there is a growing
interest for the patient*s health-related quality of life (HRQOL) before and
during tumour treatment, little is known of the end-of-life phase of these
patients. It is anticipated that patients will suffer from neurological and
cognitive deficits, personality changes, epilepsy, side-effects of medication,
and/or fatigue and depression, and that these symptoms will also have a large
impact on HRQOL of their partners/proxies. Enhancing the HRQOL of both patients
in the end-of-life phase and their partners is of importance. Improvement of
both (the organization of) medical care, counselling of the patient and the
partner/proxy, and education of caregivers may be relevant issues in this
respect.

Exploring and documenting the end-of-life phase in HGG patients: duration;
residence (at home, nursing home, hospice, hospital); transfers between care
settings, medical problems; palliative treatment/care; end-of-life decisions
and cause of death on the basis of (a) data from medical files; (b)
questionnaires to general practitioners and other professional caregivers, and
relatives of deceased HGG patients; (c) structured interviews in a selection of
general practitioners, other professional care-givers, and partners/proxies of
deceased HGG patients on encountered medical problems, HRQOL and needs of HGG
patients and their partners/proxies as well as on the organization of care for
these patients

Multi-centre retrospective descriptive study.

HGG patients themselves are not involved directly in this study. For their
relatives, there may be an emotional burden by interviewing them on the medical
experiences of their loved one, HRQOL and needs of the relatives. There is a
chance of emotional distress caused by the interview. According to the
relative*s wish, the interview may be done either at home or at the outpatient
clinic. For the caregivers who are interviewed, the main burden will be an
investment of time. Future patients and their relatives may benefit from this
study, the same holds true for their caregivers. In our view, the burden
associated with participation is proportionate to the potential value of the
research for future HGG patients, their relatives and caregivers.