Arora Neeraj K, Hamilton Ann S, Potosky Arnold L, Rowland Julia H, Aziz Noreen M, Bellizzi Keith M, Klabunde Carrie N, McLaughlin Wendy, Stevens Jennifer
Division of Cancer Control and Population Sciences, National Cancer Institute, 6130 Executive Blvd, MSC 7344, Executive Plaza North #4005, Bethesda, MD 20892-7344, USA.
J Cancer Surviv. 2007 Mar;1(1):49-63. doi: 10.1007/s11764-007-0004-3.
Several recent reports have recommended use of population-based cancer registries for evaluating the long-term health outcomes of cancer survivors. Drawing upon experiences from a study of survivors of non-Hodgkin's Lymphoma (NHL), we discuss conceptual and methodological challenges to and opportunities for conducting population-based survivorship research using cancer registries.
Survivors of aggressive NHL diagnosed between June 1998 and August 2001, 2-5 years prior to the study, were sampled from the Los Angeles Surveillance Epidemiology and End Results (SEER) registry. A conceptual framework was developed to systematically evaluate the association of sociodemographic, clinical, social, psychological, and behavioral factors with survivors' health-related quality of life. Data were collected primarily by a mailed questionnaire; medical records were also abstracted.
Of 744 eligible survivors identified from the registry, 181 (24.3%) were lost to follow-up; 408 responded to the questionnaire (54.8%); 155 (20.8%) refused. Those lost to follow-up included a significantly higher proportion of younger, male, and Hispanic survivors compared to the other two groups (P <or= 0.01). There were no sociodemographic or clinical differences among the questionnaire respondents and survivors who refused study participation. Medical records were abstracted for 59.8% of the respondents. A high percentage of agreement was seen between survivors' self-report and medical record documentation of key treatments and disease status (>or=95% for survivors with complete records).
The cancer registry served as a valuable resource for recruiting one of the largest population-based samples of NHL survivors. The methodology and example of a conceptual framework utilized in this study provide a model for future population-based cancer survivorship research.
最近的几份报告建议使用基于人群的癌症登记处来评估癌症幸存者的长期健康结果。借鉴非霍奇金淋巴瘤（NHL）幸存者研究的经验，我们讨论了使用癌症登记处进行基于人群的生存研究的概念和方法挑战与机遇。
从洛杉矶监测、流行病学和最终结果（SEER）登记处抽取1998年6月至2001年8月期间确诊的侵袭性NHL幸存者作为样本，这些幸存者在研究前2至5年被诊断。开发了一个概念框架，以系统评估社会人口统计学、临床、社会、心理和行为因素与幸存者健康相关生活质量之间的关联。数据主要通过邮寄问卷收集；还提取了医疗记录。
从登记处确定的744名合格幸存者中，181名（24.3%）失访；408名回复了问卷（54.8%）；155名（20.8%）拒绝。与其他两组相比，失访者中年轻、男性和西班牙裔幸存者的比例明显更高（P≤0.01）。问卷回复者和拒绝参与研究的幸存者之间在社会人口统计学或临床方面没有差异。对59.8%的回复者提取了医疗记录。幸存者的自我报告与关键治疗和疾病状态的医疗记录文档之间的一致性很高（完整记录的幸存者≥95%）。
癌症登记处是招募最大规模的基于人群的NHL幸存者样本之一的宝贵资源。本研究中使用的方法和概念框架示例为未来基于人群的癌症生存研究提供了一个模型。
