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Quality of Life Research
Published in: Quality of Life Research 4/2017

Open Access 01-04-2017

Impact of neurocognitive deficits on patient–proxy agreement regarding health-related quality of life in low-grade glioma patients

Authors: Divine E. Ediebah, Jaap C. Reijneveld, Martin J. B. Taphoorn, Corneel Coens, Efstathios Zikos, Neil K. Aaronson, Jan J. Heimans, Andrew Bottomley, Martin Klein, on behalf of the EORTC Quality of Life Department and Patient Reported Outcome and Behavioral Evidence (PROBE)

Published in: Quality of Life Research | Issue 4/2017

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Abstract

Purpose

Clinical trials in glioma patients with neurocognitive deficits face challenges due to lacking or unreliable patient self-reports on their health-related quality of life (HRQOL). Patient–proxy data could help solve this issue. We determined whether patient–proxy concordance levels were affected by patients’ neurocognitive functioning.

Methods

Patient and patient-by-proxy HRQOL ratings were assessed via SF-36 and EORTC QLQ-BN20, respectively, in 246 patients. Data on neurocognitive functioning were collected on a subgroup of 195 patients. Patient–proxy agreement was measured using the Bland–Altman limit of agreement, the mean difference, the concordance correlation coefficient (CCC), and the percentage difference (PD, ±0, 5, or 10 points). We defined patients to be cognitively impaired (n = 66) or cognitively intact (n = 129) based on their neurocognitive performance.

Results

Patients rated their physical function and general health to be better than their proxies did, while at the same time, patients reported more visual disorders, communication deficits, itchy skin, and problems with bladder control. The cognitively impaired subgroup reported poorer physical functioning, more visual disorders, headaches, itchy skin, and issues with bladder control. In the cognitively intact group, no statistical significant differences were observed between patients and proxies. Not surprisingly, Bland–Altman plots revealed a high agreement between the patient and patient-by-proxy rating in all HRQOL domains ranging from 95 to 99 %. The CCC was fairly high in all HRQOL domains (0.37–0.80), and the percentage of perfect agreement (PD ± 0) ranged from 8.5 to 76.8 %. In the cognitively impaired patients, the mean difference between patients and proxies was overall larger, and accordingly, agreement based on Bland–Altman plots was lower.

Conclusions

The level of agreement between patient and patient-by-proxy ratings of low-grade glioma patients’ HRQOL is generally high. However, patient–proxy agreement is lower in patients with neurocognitive deficits than in patients without neurocognitive deficits.
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Metadata
Title
Impact of neurocognitive deficits on patient–proxy agreement regarding health-related quality of life in low-grade glioma patients
Authors
Divine E. Ediebah
Jaap C. Reijneveld
Martin J. B. Taphoorn
Corneel Coens
Efstathios Zikos
Neil K. Aaronson
Jan J. Heimans
Andrew Bottomley
Martin Klein
on behalf of the EORTC Quality of Life Department and Patient Reported Outcome and Behavioral Evidence (PROBE)
Publication date
01-04-2017
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 4/2017
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1426-z

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