Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study.
Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study.
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DOI：
10.1007/s11764-011-0173-y
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发表时间：
2011-09
期刊：
影响因子：
--
通讯作者：
AYA HOPE Study Collaborative Group
中科院分区：
文献类型：
--
作者：
Harlan LC;Lynch CF;Keegan TH;Hamilton AS;Wu XC;Kato I;West MM;Cress RD;Schwartz SM;Smith AW;Deapen D;Stringer SM;Potosky AL;AYA HOPE Study Collaborative Group
癌症在青少年和年轻人（AYA）中很少见，但与大多数其他年龄组相比，这些患者的生存率几乎没有改善。此外，asa对研究的参与通常很低。我们进行了一项研究，以检查招募基于人群的AYA幸存者样本以检查治疗和健康结果问题的可行性。在2007-08年和15-39岁之间诊断为急性淋巴细胞白血病、霍奇金淋巴瘤、非霍奇金淋巴瘤、生殖细胞癌或肉瘤的个体，通过7个监测、流行病学和最终结果（SEER）癌症登记处确定，在诊断后14个月内和一年后再次邮寄调查，并审查医疗记录。525例（43%）符合条件的患者有反应，39%拒绝，17%失去随访。大多数潜在应答者（87%）需要付出大量努力。76%的受访者完成了纸质版而不是在线版的调查。在一个多变量模型中，年龄，癌症部位，教育程度和从诊断到第一次邮寄调查的时间与参与无关，尽管男性（p < 0.01），西班牙裔和非西班牙裔黑人（p < 0.001）参与的可能性较小。91%的幸存者完成了最初的调查，完成了随后的调查。尽管反应率很高，但参与研究的人充分反映了AYA癌症幸存者的数量。该研究表明，癌症登记是对AYA癌症幸存者进行观察性、纵向人群研究的宝贵基础。在这一人群中实现合理的应答率是可能的，但需要大量的资源。
Cancer is rare in adolescents and young adults (AYA), but these patients have seen little improvement in survival in contrast to most other age groups. Furthermore, participation in research by AYAs is typically low. We conducted a study to examine the feasibility of recruiting a population-based sample of AYA survivors to examine issues of treatment and health outcomes. Individuals diagnosed in 2007–08 and age 15–39 at the time of diagnosis with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma were identified by 7 Surveillance, Epidemiology, and End-Results (SEER) cancer registries, mailed surveys within 14 months after diagnosis and again a year later, and had medical records reviewed. 525 (43%) of the eligible patients responded, 39% refused and 17% were lost to follow-up. Extensive efforts were required for most potential respondents (87%). 76% of respondents completed the paper rather than online survey version. In a multivariate model, age, cancer site, education and months from diagnosis to the first mailing of the survey were not associated with participation, although males (p < 0.01), Hispanics and non-Hispanic blacks (p < 0.001) were less likely to participate. 91% of survivors completing the initial survey completed the subsequent survey. Despite the response rate, those who participated adequately reflected the population of AYA cancer survivors. The study demonstrates that cancer registries are valuable foundations for conducting observational, longitudinal population-based research on AYA cancer survivors. Achieving a reasonable response rate in this population is possible, but requires extensive resources.
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影响因子：
3
作者：
Nelson, K;Garcia, RE;Cretin, S
通讯作者：
Cretin, S
影响因子：
3.2
作者：
Ferrari, Andrea;Montello, Michael;Bleyer, Archie
通讯作者：
Bleyer, Archie
DOI：
10.1002/mpo.1316
发表时间：
2002-04-01
期刊：
MEDICAL AND PEDIATRIC ONCOLOGY
影响因子：
--
作者：
Robison, LL;Mertens, AC;Zeltzer, LK
通讯作者：
Zeltzer, LK
影响因子：
6.2
作者：
Bleyer, Archie;Budd, Troy;Montello, Michael
通讯作者：
Montello, Michael
DOI：
10.3122/jabfm.2010.04.100019
发表时间：
2010-07-01
影响因子：
2.9
作者：
Richards, Julie;Wiese, Cheryl;Richardson, Laura P.
通讯作者：
Richardson, Laura P.