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

Impact of neurocognitive deficits on patient-proxy agreement regarding health-related quality of life in low-grade glioma patients
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DOI:
10.1007/s11136-016-1426-z
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发表时间:
2017-04-01
影响因子:
3.5
通讯作者:
Klein, Martin
Klein, Martin
中科院分区:
医学2区
文献类型:
--
作者:
Ediebah, Divine E.;Reijneveld, Jaap C.;Klein, Martin

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由于缺乏或不可靠的患者健康相关生活质量(HRQOL)的自我报告,神经胶质瘤患者神经认知缺陷的临床试验面临挑战。患者代理数据可以帮助解决这个问题。通过SF-36和EORTC QLQ-BN 20分别评估了246例患者和患者代理HRQOL评分。收集了195例患者的神经认知功能数据。使用Bland-Altman一致性限、平均差异、一致性相关系数(CCC)和百分比差异(PD,+/- 0、5或10分)测量患者-代理一致性。我们根据患者的神经认知表现将其分为认知受损(n = 66)和认知完好(n = 129)两类,患者认为自己的身体功能和总体健康状况优于其代理人,而与此同时,患者报告的视力障碍、沟通障碍、皮肤瘙痒和膀胱控制问题更多。认知受损亚组报告身体功能较差,视力障碍,头痛,皮肤瘙痒和膀胱控制问题。在认知完整组中,患者和代理人之间没有观察到统计学显著差异。毫不奇怪,Bland-Altman图显示,在所有HRQOL领域,患者和患者代理评级之间的一致性很高,范围为95%至99%。所有HRQOL领域的CCC都相当高(0.37-0.80),完全一致率(PD +/- 0)范围为8.5%-76.8%。在认知功能受损的患者中,患者和代理人之间的平均差异总体上较大,因此,基于Bland-Altman图的一致性较低。患者和患者之间的低级别胶质瘤患者HRQOL代理评级的一致性水平通常较高。然而,神经认知缺陷患者的患者代理协议低于无神经认知缺陷的患者。
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.