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

ABSTRACT: 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.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.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.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.

SUBMITTER: Ediebah DE

PROVIDER: S-EPMC5334398 | biostudies-literature | 2017 Apr

REPOSITORIES: biostudies-literature

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

Ediebah Divine E DE Reijneveld Jaap C JC Taphoorn Martin J B MJ Coens Corneel C Zikos Efstathios E Aaronson Neil K NK Heimans Jan J JJ Bottomley Andrew A Klein Martin M

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 20161015 4

<h4>Purpose</h4>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.<h4>Methods</h4>Patient and patient-by-proxy HRQOL ratings were assessed via SF-36 and EORTC QLQ-BN20, respectively, in 246 patients. Data on neuroc ...[more]

PMID: 27744512

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Project description:BACKGROUND: The use of self-report measurements in clinical settings is increasing. However, in patients with limitations that interfere with reliable self-assessment such as cognitive impairment or mood disturbances, as may be the case in multiple sclerosis (MS), data collection might be problematic. In these situations, information obtained from proxy respondents (e.g. partners) may replace self-ratings. The aim of this study was to examine the value of proxy ratings at separate points in time and to assess patient-proxy agreement on possible changes in disease impact of MS. METHODS: Fifty-six MS patients and their partners completed the Multiple Sclerosis Impact Scale (MSIS-29) at baseline and follow-up, two years later. Patient-proxy agreement was assessed at both time points by calculating intraclass correlation coefficients (ICCs), exact and global agreement and the mean directional differences between groups. Agreement of change over time was assessed by calculating ICCs between change scores. In parallel, global ratings of both patients and proxy respondents of the extent to which the patient had improved or deteriorated over the past two years were collected to validate possible changes on the MSIS-29. RESULTS: At both time points, agreement on the physical scale was higher than agreement on the psychological scale (ICCs at baseline were 0.81 for the physical scale and 0.72 for the psychological scale; at follow-up, the ICC values were 0.86 and 0.65 respectively). At follow-up, statistically significant mean differences between patients and proxies were noted for the physical scale (-4.8 +/- 12.7, p = 0.006) and the psychological scale (-8.9 +/- 18.8, p = 0.001). Agreement between change scores on the MSIS-29 was fair (ICC < 0.60). Our analyses suggest that the validity of measuring changes over time might be better for proxy respondents compared to patients. CONCLUSION: Proxy respondents could act as a reliable source of information in cross-sectional studies. Moreover, results suggested that agreement on change over time might be better for proxy respondents compared to patients. Although this remarkable finding should be interpreted cautiously because of several limitations of the study, it does plead for further investigation of this important topic.

Project description:BackgroundTo assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement.MethodsCross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n?=?854 receiving home care and n?=?476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis.ResultsThe overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings.ConclusionsProxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.

Dataset Information

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

Publications

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

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