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综合癌症中心早期临床试验诊所患者的癌症相关互联网使用和在线社交网络

Cancer-Related Internet Use and Online Social Networking Among Patients in an Early-Phase Clinical Trials Clinic at a Comprehensive Cancer Center.

作者信息

George Goldy C, Buford Adrianna, Hess Kenneth, Piha-Paul Sarina A, Zinner Ralph, Subbiah Vivek, Hinojosa Christina, Cleeland Charles S, Meric-Bernstam Funda, Bernstam Elmer V, Hong David S

机构信息

Goldy C. George, Adrianna Buford, Kenneth Hess, Sarina A. Piha-Paul, Ralph Zinner, Vivek Subbiah, Christina Hinojosa, Charles S. Cleeland, Funda Meric-Bernstam, and David S. Hong, The University of Texas MD Anderson Cancer Center; and Elmer V. Bernstam, The University of Texas School of Biomedical Informatics, Houston, TX.

出版信息

JCO Clin Cancer Inform. 2018 Dec;2:1-14. doi: 10.1200/CCI.17.00030.

DOI:10.1200/CCI.17.00030
PMID:30652565
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6874009/
Abstract

PURPOSE

We examined patterns, correlates, and the impact of cancer-related Internet use among patients with advanced cancer in a phase I clinical trials clinic for molecularly targeted oncologic agents.

METHODS

An anonymous questionnaire on Internet use for cancer-related purposes that incorporated input from phase I clinical trial oncologists and patients was self-administered by patients age ≥ 18 years in a phase I clinic. Multivariable modeling was used. Data were analyzed for the overall sample and by generation, which was defined by year of birth.

RESULTS

Of 291 patients (52% women, 82% non-Hispanic white, 50% age ≤ 60 years), 62% were cancer-related Internet users (CIUs). Cancer-related Internet use was associated with an income of ≥ $60,000 (odds ratio, 2.42; P = .004). CIUs used the Internet to learn about their cancer (85%), treatment adverse effects (65%), clinical trials (52%), new alternative treatments (42%), and symptom management (41%). CIUs most frequently used the hospital Web site (70%) to learn about clinical trials, followed by ClinicalTrials.gov (42%) and search engines (41%). The emotional impact of Internet-derived cancer information on CIUs varied-56% felt empowered, 34% anxious, 29% relieved, and 17% confused. Cancer-related Internet information made 51% of patients from the Millennial (born after 1990) and Generation X/Y (born 1965 to 1990) CIU populations anxious compared with < 29% of CIUs from older generations (born 1964 and before). Most CIUs desired more online information about new experimental drugs (91%) and US Food and Drug Administration-approved drugs for cancer (72%).

CONCLUSION

As most phase I patients use the Internet for cancer-related purposes, the Internet overall and hospital Web sites should provide more extensive, pertinent, and helpful information on clinical trials and cancer treatment to phase I patients.

摘要

目的

我们在一家针对分子靶向肿瘤药物的I期临床试验诊所,研究了晚期癌症患者使用互联网与癌症相关的模式、关联因素及其影响。

方法

一份关于用于癌症相关目的互联网使用情况的匿名问卷,纳入了I期临床试验肿瘤学家和患者的意见,由年龄≥18岁的患者在I期诊所自行填写。采用多变量建模。对总体样本和按出生年份定义的代际进行数据分析。

结果

在291名患者(52%为女性,82%为非西班牙裔白人,50%年龄≤60岁)中,62%是癌症相关互联网用户(CIU)。癌症相关互联网使用与收入≥6万美元相关(比值比,2.42;P = 0.004)。CIU使用互联网了解他们的癌症(85%)、治疗不良反应(65%)、临床试验(52%)、新的替代治疗(42%)和症状管理(41%)。CIU最常使用医院网站(70%)了解临床试验,其次是ClinicalTrials.gov(42%)和搜索引擎(41%)。互联网获取的癌症信息对CIU的情感影响各不相同——56%感到有力量,34%焦虑,29%宽慰,17%困惑。与出生于1964年及以前的老一辈CIU人群中不到29%相比,癌症相关互联网信息使千禧一代(1990年后出生)和X/Y一代(1965年至1990年出生)CIU人群中的51%感到焦虑。大多数CIU希望获得更多关于新实验药物(91%)和美国食品药品监督管理局批准的癌症药物(72%)的在线信息。

结论

由于大多数I期患者将互联网用于癌症相关目的,互联网总体以及医院网站应向I期患者提供更广泛、相关且有用的关于临床试验和癌症治疗的信息。