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Moving from clinician-defined to patient-reported outcome measures for survivors of high-grade glioma

Authors Rosenlund L, Degsell E, Jakola AS

Received 10 May 2019

Accepted for publication 23 July 2019

Published 23 August 2019 Volume 2019:10 Pages 267—276


Checked for plagiarism Yes

Review by Single-blind

Peer reviewer comments 2

Editor who approved publication: Dr Robert Howland

Lena Rosenlund,1,2 Eskil Degsell,1,3,4 Asgeir Store Jakola5–7

1Regional Cancer Centre Stockholm, Stockholm, Sweden; 2Institute of Health and Care Sciences, Sahlgrenska Academy, Gothenburg, Sweden; 3Malignant Brain Tumor Pathway, Quality and Patient Safety Department, Karolinska University Hospital, Stockholm, Sweden; 4The Swedish Brain Tumor Association, Stockholm, Sweden; 5Department of Clinical Neurosciences, Institute of Physiology and Neuroscience, Sahlgrenska Academy, Gothenburg, Sweden; 6Department of Neurosurgery, Sahlgrenska University Hospital, Gothenburg, Sweden; 7Department of Neurosurgery, St. Olavs Hospital, Trondheim, Norway

Correspondence: Lena Rosenlund
University of Gothenburg, Regional Cancer Centre Stockholm, Box 6909, Stockholm 102 39, Sweden
Tel +46 73 668 1891

Background: Persons with high-grade glioma face both neurological and cancer-related symptoms from the tumor itself and its treatment affecting their daily lives. Survival alone is not an adequate outcome, the quality of the survivorship experience needs to be regarded with equal importance. Patient-reported outcome (PRO) measures can be used to evaluate treatment effects and symptom management interventions.
Purpose: The aim of this review was to identify the use, challenges, and potential of PRO measures in survivors of high-grade glioma.
Methods: A narrative expert opinion review was performed on the subject. In addition to our own experiences we searched PubMed, Cumulative Index to Nursing and Allied Health Literature, the Cochrane Library, and PsycINFO for brain tumor-specific PRO measures used in the population of adult patients with high-grade glioma, both original articles and reviews were included.
Results: There are several PRO measures that have been validated for patients with primary brain tumors including high-grade glioma. PRO measures are used both in clinical trials to evaluate the effect of treatment on health-related quality of life, and in daily clinical practice for holistic needs assessment and symptom management. Common PRO measures used for patients with high-grade glioma are European Organization for Research and Treatment of Cancer general instrument for patients with cancer together with brain tumor module, Functional Assessment of Cancer Therapy-Brain, and MD Anderson Symptom Inventory for Brain Tumor. Neurologic and cognitive disorders often occur in patients with high-grade glioma, which affects patients’ ability to self-report over time, making it more challenging in this population. PRO as a primary outcome seems underutilized.
Conclusion: For clinical research, PRO measures need to be used together with other clinical outcome measures rather than replacing traditional outcome measures. Moving to more use of PRO measures in survivorship care has potential to improve patient-caregiver-healthcare team communication, symptom management, and quality of care. Implementing PROs in survivorship care should also involve caregivers and a response based on the results.

Keywords: high-grade glioma, brain tumor, patient-reported outcome measures, symptom management

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