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01-12-2014 | Original Article

Glioblastoma multiforme from diagnosis to death: a prospective, hospital-based, cohort, pilot feasibility study of patient reported symptoms and needs

Authors: Heidrun Golla, Maryam Ale Ahmad, Maren Galushko, Jürgen Hampl, Mohammad Maarouf, Michael Schroeter, Ulrich Herrlinger, Martin Hellmich, Raymond Voltz

Published in: Supportive Care in Cancer | Issue 12/2014

Abstract

Purpose

Glioblastoma (GBM) patients have many palliative care (PC) issues. To date, there are no studies examining the prospective usage of validated PC assessment tools as patient reported outcome measures for GBM patients.

Methods

GBM patients’ PC issues were assessed from diagnosis to death or for at least 12 months every 7 weeks (±8 days) using semi-structured interviews and the Hospice and Palliative Care Evaluation (HOPE, including Eastern Cooperative Oncology Group (ECOG) performance status, 17 items) and the Palliative Outcome Scale (POS, 11 items). Data from patients who died within 12 months of the last patient’s enrollment were evaluated using summarizing content analysis, visual graphical analysis (VGA), and linear mixed models for repeated measures.

Results

Nineteen of 33 patients screened were enrolled; two dropped out and four were still alive at the end of the study. The remaining 13 were assessed at 59 points until death (time range 4–68 weeks; 1–10 contacts per patient; assessment: self, 33; joint, 8; external, 18). VGA of the HOPE and POS data, including all 1,652 assessed item data, showed consistent trajectory profiles for 14 of 28 items: 10 were increasing (meaning symptom worsening) and comprised predominantly psychosocial issues and care dependency. Type of assessment partly interacted with time, however, not qualitatively so. Analysis of semi-structured interviews revealed delayed interactions with PC/hospice services and numerous neuropsychiatric problems not detected by HOPE and POS.

Conclusions

Prospective self-assessment of GBM patients’ PC issues is feasible. However, disease progression may necessitate further, external assessment. Modification of existing PC assessment tools is needed to detect GBM-specific issues.

The term “caregiver” is most widely used to refer to non-professionals assisting in the care of persons receiving palliative care. For our purposes here, this refers to relatives of the GBM patients caring for them, also sometimes called family caregivers.

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Title: Glioblastoma multiforme from diagnosis to death: a prospective, hospital-based, cohort, pilot feasibility study of patient reported symptoms and needs
Authors: Heidrun Golla
Maryam Ale Ahmad
Maren Galushko
Jürgen Hampl
Mohammad Maarouf
Michael Schroeter
Ulrich Herrlinger
Martin Hellmich
Raymond Voltz
Publication date: 01-12-2014
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 12/2014
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-014-2384-z

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Abstract

Purpose

Methods

Results

Conclusions

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