Girgis Afaf, Durcinoska Ivana, Levesque Janelle V, Gerges Martha, Sandell Tiffany, Arnold Anthony, Delaney Geoff P
Centre for Oncology Education and Research Translation, Ingham Institute for Applied Medical Research, Liverpool, Australia.
South Western Sydney Clinical School, Faculty of Medicine, The University of New South Wales, Liverpool, Australia.
J Med Internet Res. 2017 Oct 2;19(10):e330. doi: 10.2196/jmir.8360.
Despite accumulating evidence indicating that collecting patient-reported outcomes (PROs) and transferring results to the treating health professional in real time has the potential to improve patient well-being and cancer outcomes, this practice is not widespread.
The aim of this study was to test the feasibility and acceptability of PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care), a newly developed electronic health (eHealth) system that facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions and patient self-management, and data retrieval to support ongoing evaluation and innovative research.
We developed an eHealth system in consultation with content-specific expert advisory groups and tested it with patients receiving treatment or follow-up care in two hospitals in New South Wales, Australia, over a 3-month period. Participants were recruited in clinic and completed self-report Web-based assessments either just before their upcoming clinical consultation or every 4 weeks if in follow-up care. A mixed methods approach was used to evaluate feasibility and acceptability of PROMPT-Care; data collected throughout the study informed the accuracy and completeness of data transfer procedures, and extent of missing data was determined from participants' assessments. Patients participated in cognitive interviews while completing their first assessment and completed evaluation surveys and interviews at study-end to assess system acceptability and usefulness of patient self-management resources, and oncology staff were interviewed at study-end to determine the acceptability and perceived usefulness of real-time PRO reporting.
A total of 42 patients consented to the study; 7 patients were withdrawn before starting the intervention primarily because of changes in eligibility. Overall, 35 patients (13 on treatment and 22 in follow-up) completed 67 assessments during the study period. Mean completeness of patient-reported data was 93%, with 100% accuracy of data transfer. Ten patients completed cognitive interviews, 28 completed evaluation surveys, and 14 completed evaluation interviews at study-end. PROMPT-Care patient acceptability was high-100% (28/28) reported the time to complete the Web-based assessments (average 15 min) as about right, most willing to answer more questions (79%, 22/28 yes), 96% (27/28) found the Web-based assessment easier or same as completing a paper copy, and they valued the self-management resources . Oncology staff (n=5) also reported high acceptability and potential feasibility of the system.
Patients and oncology staff found the PROMPT-Care system to be highly acceptable, and the results suggest that it would be feasible to implement it into an oncology setting. Suggested modifications to the patient assessment survey, clinician access to the reports, and system requirements will be made as part of the next stage of large-scale testing and future implementation of the system as part of routine care.
Australian New Zealand Clinical Trials Registry ACTRN1261500135294; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369299&isReview=true (Archived by WebCite at http://www.webcitation.org/6lzylG5A0).
尽管越来越多的证据表明,收集患者报告的结果(PROs)并将结果实时传达给主治医护人员有可能改善患者的健康状况和癌症治疗效果,但这种做法并不普遍。
本研究旨在测试PROMPT-Care(个性化治疗与护理的患者报告结果测量)的可行性和可接受性,这是一种新开发的电子健康(eHealth)系统,有助于从癌症患者那里收集PRO数据、进行数据链接和检索以支持临床决策和患者自我管理,以及进行数据检索以支持持续评估和创新性研究。
我们与特定内容的专家咨询小组协商开发了一个电子健康系统,并在澳大利亚新南威尔士州的两家医院对接受治疗或随访护理的患者进行了为期3个月的测试。参与者在诊所招募,如果是接受随访护理,则在即将进行临床咨询前或每4周完成基于网络的自我报告评估。采用混合方法评估PROMPT-Care的可行性和可接受性;整个研究过程中收集的数据用于了解数据传输程序的准确性和完整性,并根据参与者的评估确定缺失数据的程度。患者在完成首次评估时参加认知访谈,并在研究结束时完成评估调查和访谈,以评估系统的可接受性以及患者自我管理资源的有用性,研究结束时对肿瘤医护人员进行访谈,以确定实时PRO报告的可接受性和感知有用性。
共有42名患者同意参与本研究;7名患者在开始干预前退出,主要原因是资格变更。总体而言,35名患者(13名正在接受治疗,22名处于随访中)在研究期间完成了67次评估。患者报告数据的平均完整性为93%,数据传输准确率为100%。10名患者完成了认知访谈,28名完成了评估调查,14名在研究结束时完成了评估访谈。PROMPT-Care在患者中的可接受性很高——100%(28/28)的患者报告完成基于网络评估的时间(平均15分钟)合适,大多数患者愿意回答更多问题(79%,22/28是),96%(27/28)的患者认为基于网络的评估比填写纸质表格更容易或一样容易,并重视自我管理资源。肿瘤医护人员(n = 5)也报告了该系统的高可接受性和潜在可行性。
患者和肿瘤医护人员发现PROMPT-Care系统非常可接受,结果表明将其应用于肿瘤治疗环境是可行的。作为该系统下一阶段大规模测试和未来作为常规护理实施的一部分,将对患者评估调查、临床医生获取报告的方式以及系统要求提出建议的修改。
澳大利亚新西兰临床试验注册中心ACTRN1261500135294;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369299&isReview=true(由WebCite存档于http://www.webcitation.org/luoy7G5A0)