Department of Medical Social Sciences, Comprehensive Transplant Center, and Institute for Healthcare Studies, Northwestern University Feinberg School of Medicine, Chicago, Illinois 60611, USA.
Cancer. 2013 Jan 15;119(2):429-37. doi: 10.1002/cncr.27688. Epub 2012 Jul 6.
Metastatic renal cell cancer is associated with poor long-term survival and has no cure. Traditional clinical endpoints are best supplemented by patient-reported outcomes designed to assess symptoms and function. Normative data was obtained on the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy-Kidney Symptom Index (NFKSI) to aid in score interpretation and planning of future trials.
General population data were obtained from 2000 respondents, who completed the 19-item NFKSI-19, as well the SF-36 (Short Form 36-item instrument) and the PROMIS-29 (29-item Patient Reported Outcomes Measurement Information System), both general health status measures. Basic demographic and self-reported comorbidity data were also collected.
The sample was 50% female, 85.7% caucasian, with an equal distribution across age bands from 18 years to 75 years and older. Most respondents (62.8%) had more than a high school education and reported an Eastern Cooperative Oncology Group performance status of normal activity without symptoms (63.4%). Score distributions on the NFKSI-19, its subscales, and individual items are summarized.
The NFKSI-19 and its subscales now have scores for the general US population, allowing comparability to generic questionnaires such as the SF-36 and PROMIS-29. These data can be used to guide treatment expectations and plan future comparative effectiveness research using the scales.
转移性肾细胞癌与长期生存不良相关，目前尚无治愈方法。传统的临床终点最好通过旨在评估症状和功能的患者报告结果来补充。已经获得了国家综合癌症网络-癌症治疗功能评估-肾脏症状指数（NFKSI）的常模数据，以帮助解释分数并为未来的试验提供计划。
从完成 19 项 NFKSI-19 以及 SF-36（36 项简短仪器）和 PROMIS-29（29 项患者报告结果测量信息系统）的 2000 名受访者中获得一般人群数据，这两个都是一般健康状况的衡量标准。还收集了基本的人口统计学和自我报告的合并症数据。
该样本中 50%为女性，85.7%为白种人，年龄分布在 18 岁至 75 岁及以上之间均等。大多数受访者（62.8%）接受过高中以上教育，并且报告其东部合作肿瘤学组表现为正常活动且无症状（63.4%）。总结了 NFKSI-19 及其子量表和个别项目的得分分布。
NFKSI-19 及其子量表现在具有美国一般人群的分数，这使得与 SF-36 和 PROMIS-29 等通用问卷具有可比性。这些数据可用于指导治疗期望并使用这些量表计划未来的比较效果研究。
