Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden (original) (raw)

Journal Article

,

Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

Corresponding Author: Jeffrey J. Raizer, MD, Northwestern University, Feinberg School of Medicine, Department of Neurology, 710 N. Lake Shore Drive, Chicago, IL 60611 (jraizer@nmff.org).

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Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

Search for other works by this author on:

,

Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

Search for other works by this author on:

,

Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

Search for other works by this author on:

,

Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

Search for other works by this author on:

,

Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

Search for other works by this author on:

,

Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

Search for other works by this author on:

,

Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

Search for other works by this author on:

,

Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

Search for other works by this author on:

,

Department of Neurology,

Northwestern University

,

Chicago, Illinois

(D.I.J., P.K., B.V.S., S.A.G., L.R., J.J.R.);

Department of Preventive Medicine

Northwestern University

,

Chicago, Illinois

(A.W.R., I.B.H.);

Department of Neurosurgery

Northwestern University

,

Chicago, Illinois

(J.P.C., K.M.);

Department of Radiation Oncology

,

Northwestern University

,

Chicago, Illinois

(M.M.);

Medical Social Sciences

,

Northwestern University

,

Chicago, Illinois

(L.I.W.)

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Received:

26 October 2013

Accepted:

05 February 2014

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Daniel I. Jacobs, Priya Kumthekar, Becky V. Stell, Sean A. Grimm, Alfred W. Rademaker, Laurie Rice, James P. Chandler, Kenji Muro, MaryAnne Marymont, Irene B. Helenowski, Lynne I. Wagner, Jeffrey J. Raizer, Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden, Neuro-Oncology Practice, Volume 1, Issue 2, June 2014, Pages 47–54, https://doi.org/10.1093/nop/npu004
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Abstract

Background

Given the neurocognitive impairment experienced by many patients with malignant gliomas, caregiver reports can be critical in assessing the quality of life (QOL) of these patients. In this study, we explored whether assessment of patient QOL by the primary caregiver shows concordance with the patient's self-reported QOL, and we quantified the burden faced by caregivers.

Methods

QOL of 45 patients was evaluated by both the patient and primary caregiver on 3 or more separate occasions using the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument, and concordance between the 2 reports was evaluated. Caregiver burden was measured using the Caregiver Quality of Life Index-Cancer (CQOL-C) instrument.

Results

Overall, good concordance was observed between the patient and caregiver FACT-Br reports (intraclass correlation coefficient = 0.74). Patient-reported FACT-Br scores were 4.75 (95% CI, 1.44–8.05) points higher than paired caregiver reports on the 200-point scale (P = .008); however, this difference did not achieve clinical significance. Caregiver burden, as measured by the CQOL-C, was significantly greater among caregivers in this study than those previously reported for caregivers of patients with lung, breast, or prostate cancer (P < .001).

Conclusions

Despite minor discrepancies in caregiver assessments of patient QOL relative to patient self-reports, our results suggest that the caregiver assessments can serve as adequate proxies for patient reports. Our results also illustrate the particularly heavy burden faced by caregivers of patients with malignant glioma. Further research into both of these areas is warranted.

© The Author(s) 2014. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

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