Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2017 Apr;26(4):869-880.
doi: 10.1007/s11136-016-1426-z. Epub 2016 Oct 15.

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

Divine E Ediebah  1 , Jaap C Reijneveld  2 , Martin J B Taphoorn  2   3 , Corneel Coens  1 , Efstathios Zikos  1 , Neil K Aaronson  4 , Jan J Heimans  2 , Andrew Bottomley  1 , Martin Klein  5 ; EORTC Quality of Life Department and Patient Reported Outcome and Behavioral Evidence (PROBE)
Affiliations

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

Divine E Ediebah et al. Qual Life Res. 2017 Apr.

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.

Trial registration: ClinicalTrials.gov NCT01290939 NCT01164189.

Keywords: Brain tumor; Health-related quality of life; Neurocognitive deficits; Proxy ratings.

PubMed Disclaimer

Conflict of interest statement

Conflicts of interest

No authors have a potential conflict of interest.

Human and animal rights

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Figures

Fig. 1
Fig. 1
Bland–Altman plot showing the range of agreement with their 95 % limit for physical component summary
Fig. 2
Fig. 2
Bland–Altman plot showing the range of agreement with their 95 % limit for physical component summary
See this image and copyright information in PMC

References

    1. Taphoorn MJ, Stupp R, Coens C, Osoba D, Kortmann R, van den Bent MJ, et al. Health-related quality of life in patients with glioblastoma: A randomised controlled trial. The Lancet Oncology. 2005;6(12):937–944. doi: 10.1016/S1470-2045(05)70432-0. - DOI - PubMed
    1. Taphoorn MJ, van den Bent MJ, Mauer ME, Coens C, Delattre JY, Brandes AA, et al. Health-related quality of life in patients treated for anaplastic oligodendroglioma with adjuvant chemotherapy: Results of a European Organisation for Research and Treatment of Cancer randomized clinical trial. Journal of Clinical Oncology. 2007;25(36):5723–5730. doi: 10.1200/JCO.2007.12.7514. - DOI - PubMed
    1. Reardon DA, Galanis E, DeGroot JF, Cloughesy TF, Wefel JS, Lamborn KR, et al. Clinical trial end points for high-grade glioma: The evolving landscape. Neuro-Oncology. 2011;13(3):353–361. doi: 10.1093/neuonc/noq203. - DOI - PMC - PubMed
    1. Reijneveld JC, Sitskoorn MM, Klein M, Nuyen J, Taphoorn MJ. Cognitive status and quality of life in patients with suspected versus proven low-grade gliomas. Neurology. 2001;56(5):618–623. doi: 10.1212/WNL.56.5.618. - DOI - PubMed
    1. Taphoorn MJ, Sizoo EM, Bottomley A. Review on quality of life issues in patients with primary brain tumors. The Oncologist. 2010;15(6):618–626. doi: 10.1634/theoncologist.2009-0291. - DOI - PMC - PubMed

Associated data