Sneeuw K C, Aaronson N K, de Haan R J, Limburg M
Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands.
Stroke. 1997 Aug;28(8):1541-9. doi: 10.1161/01.str.28.8.1541.
Because many stroke survivors have cognitive and communication disorders, self-reported information on a patient's quality of life (QL) cannot always be obtained. Proxy ratings may be used to prevent exclusion of this highly relevant subgroup of patients from QL studies. The purpose of this study was to evaluate both the value and possible limitations of such proxy ratings.
The patient sample was composed of 437 patients who had suffered a stroke 6 months earlier. QL was assessed by means of the Sickness Impact Profile (SIP). For 108 patients who were not communicative because of cognitive or linguistic deficits, proxy ratings on the SIP were provided by the patients' significant others. For 228 of the 329 communicative patients, both self-reported and proxy SIP ratings were obtained.
When mean SIP scores for patients with both self-reported and proxy-derived data available were compared, the proxy mean scores were generally in close agreement with those of the patients. However, systematic differences were noted for several SIP scales, with proxies rating patients as having more QL impairments than the patients themselves. Intraclass correlations were moderate to high for most SIP subscales (average intraclass correlation coefficient [ICC] = .63), the physical (ICC = .85) and psychosocial dimensions (ICC = .61), and the total SIP score (ICC = .77). The proxy SIP scores were sensitive to differences in patients' functional health, which supports the validity of these ratings. For all patients combined, more QL impairments were found for patients with supratentorial cortical or subcortical infarctions and hemorrhages than for patients with lacunar infarctions and infratentorial strokes. Although proxy respondents were more frequently needed for patients with the first two types of stroke, we found no evidence of biased results as a consequence of an unbalanced use of proxy respondents across the different types of stroke.
These results suggest that the benefits of using proxy ratings for noncommunicative patients outweigh their limitations. The findings stress the need for inclusion of this important subgroup of patients in QL studies. Their significant others are able to provide useful information on these patients' QL.
由于许多中风幸存者存在认知和沟通障碍，患者生活质量（QL）的自我报告信息往往无法获取。代理评级可用于避免将这一高度相关的患者亚组排除在QL研究之外。本研究的目的是评估此类代理评级的价值及可能存在的局限性。
患者样本由437名6个月前发生中风的患者组成。通过疾病影响量表（SIP）评估QL。对于108名因认知或语言缺陷而无法沟通的患者，由其重要他人提供SIP的代理评级。在329名有沟通能力的患者中，有228名患者同时提供了自我报告和代理的SIP评级。
当比较同时有自我报告数据和代理数据患者的SIP平均得分时，代理平均得分通常与患者的得分高度一致。然而，在几个SIP量表上发现了系统性差异，代理评定患者的QL损害比患者自己评定的更多。大多数SIP子量表的组内相关性为中度到高度（平均组内相关系数[ICC]=0.63），身体维度（ICC=0.85）和心理社会维度（ICC=0.61）以及SIP总分（ICC=0.77）。代理SIP得分对患者功能健康的差异敏感，这支持了这些评级的有效性。对于所有患者，幕上皮质或皮质下梗死和出血患者的QL损害比腔隙性梗死和幕下中风患者更多。虽然前两种类型中风的患者更常需要代理受访者，但我们没有发现因不同类型中风中代理受访者使用不均衡而导致结果有偏差的证据。
这些结果表明，对无沟通能力患者使用代理评级的益处大于其局限性。研究结果强调在QL研究中纳入这一重要患者亚组的必要性。他们的重要他人能够提供有关这些患者QL的有用信息。
