Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system.
Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system.
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DOI：
10.2196/jmir.2764
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发表时间：
2013-10-25
影响因子：
7.4
通讯作者：
Wright P
中科院分区：
文献类型：
--
作者：
Ashley L;Jones H;Thomas J;Newsham A;Downing A;Morris E;Brown J;Velikova G;Forman D;Wright P
与患者路径中的临床数据相关的患者报告结局（PRO）的常规测量对于告知未来的护理计划越来越重要。开发了创新的电子癌症幸存者患者报告结局（ePOCS）系统，以整合在特定诊断后时间点在线收集的PRO与癌症登记中的临床和治疗数据。该研究通过使用诊断后前15个月内可能治愈的乳腺癌、结直肠癌和前列腺癌患者样本运行系统，测试了ePOCS的技术和临床可行性。患者在诊断后6个月（T1）、9个月（T2）和15个月（T3）内通过ePOCS完成了包括多个患者报告结局指标（PROM）的问卷。可行性结果包括系统信息学性能、患者招募、保留、代表性和问卷完成（应答率）、患者反馈和系统运行中涉及的管理负担。ePOCS高效运行，几乎没有技术问题。患者参与率总体为55.21%（636/1152），尽管因接触模式而异，但面对面接触的患者（61.4%，490/798）明显高于电话（48.8%，21/43）或信件（41.0%，125/305）。老年人和不富裕的患者不太可能加入（均P<0.001）。大多数未同意者（71.1%，234/329）引用了信息技术原因（即，使用计算机困难）。85.1%（541/636）的受邀参与者在T1完成了全部或部分问卷（共80个问题），T2时70.0%（442/631）在T3（148-154个问题），有66.3%（414/624）的参与者在所有三个时间点完全完成，有57.6%（344/597）的参与者完全完成。提醒（主要是通过电子邮件）有效地促使回应。PRO与100%患者（N=636）的癌症登记数据成功关联。参与者的反馈是令人鼓舞的和积极的，大多数患者报告说，他们发现ePOCS易于使用，如果询问，他们将继续长期使用该系统（86.2%，361/419）。ePOCS的日常运行在管理上并不繁重，患者发起的询问平均每月仅11次。ePOCS系统的基础信息学证明了成功的概念验证-该系统成功地将PRO与100%患者的登记数据联系起来。大多数患者都很愿意参与。随着互联网的普及，参与率可能会提高。ePOCS可以帮助克服常规收集PRO并与临床数据联系的挑战，这对于治疗和支持性护理计划以及针对性服务提供是不可或缺的。
Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries. This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis. Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system. ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback was encouraging and positive, with most patients reporting that they found ePOCS easy to use and that, if asked, they would continue using the system long-term (86.2%, 361/419). ePOCS was not administratively burdensome to run day-to-day, and patient-initiated inquiries averaged just 11 inquiries per month. The informatics underlying the ePOCS system demonstrated successful proof-of-concept – the system successfully linked PROs with registry data for 100% of the patients. The majority of patients were keen to engage. Participation rates are likely to improve as the Internet becomes more universally adopted. ePOCS can help overcome the challenges of routinely collecting PROs and linking with clinical data, which is integral for treatment and supportive care planning and for targeting service provision.
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影响因子：
8.8
作者：
Jefford, M.;Rowland, J.;Grunfeld, E.;Richards, M.;Maher, J.;Glaser, A.
通讯作者：
Glaser, A.
影响因子：
3.1
作者：
Ashley, Laura;Jones, Helen;Wright, Penny
通讯作者：
Wright, Penny
影响因子：
3
作者：
Ahmed, Sara;Berzon, Richard A.;Wu, Albert W.
通讯作者：
Wu, Albert W.
影响因子：
3.5
作者：
Ashley, Laura;Jones, Helen;Wright, Penny
通讯作者：
Wright, Penny
DOI：
10.1093/jncimonographs/lgh038
发表时间：
2004-01-01
期刊：
Journal of the National Cancer Institute. Monographs
影响因子：
--
作者：
Lipscomb, Joseph;Donaldson, Molla S;Hiatt, Robert A
通讯作者：
Hiatt, Robert A