Evaluation of an Online Platform for Cancer Patient Self-reporting of Chemotherapy Toxicities

Abstract

The current mechanism for monitoring toxicity symptoms in cancer trials depends on a complex paper-based process. Electronic collection of patient-reported outcomes (PROs) may be more efficient and accurate. An online PRO platform was created including a simple data entry interface, real-time report generation, and an alert system to e-mail clinicians when patients self-report serious toxicities. Feasibility assessment involving 180 chemotherapy patients demonstrated high levels of use at up to 40 follow-up clinic visits per patient over 16 months (85% of patients at any given visit), with high levels of patient and clinician acceptance and satisfaction (>95%). Alerts were used as the basis for delayed chemotherapy treatments, dose modifications, and scheduling changes. These results demonstrate that online patient-reporting is a feasible strategy for chemotherapy toxicity symptom monitoring, and may improve safety and satisfaction with care. Ongoing multi-center research will evaluate the impact of this approach on clinical and administrative outcomes.

An Electronic Patient-Reported Outcome Tool for the FACT-B (Functional Assessment of Cancer Therapy-Breast) Questionnaire for Measuring the Health-Related Quality of Life in Patients With Breast Cancer: Reliability Study (Preprint)

“…There are several advantages of ePRO, such as rapid access to data, a probable avoidance of errors during data entry, and fewer missing data in comparison with paperbased surveys and the capacity to trigger alerts or notifications for answers to special circumstances 3 and an improvement in patients' willingness to report sensitive information [23,28]. Although paperbased surveys of PRO still predominate because there are only a few reliable and validated ePRO questionnaires, numerous projects have evaluated feasibility and acceptance of HRQoL in ePRO measurement in the last few years [29][30][31][32][33][34]. Nevertheless, knowledge regarding patient acceptance, feasibility, and barriers remains limited [35], especially since hurdles might exist in relation to health status, technical skills, and socioeconomic aspects, which could influence both patients´ willingness to use ePRO and their response behavior [10,36,37].…”

Website design: Technical, social and medical issues for self-reporting by elderly patients

“…In addition, websites used to gather patients' data must provide very clear guidance regarding the use to which patients' data will be put, and how to enter such data [16], [17]. Moreover, unless patient websites utilising established clinical questionnaires are designed appropriately, the statistical reliability and validity of the patient data gathered might be undermined due to mode effects (that is differences in the patient data entered due to the mode of data gathering).…”

“…Patients undertaking on-line selfreporting need to be aware as to the exact nature of how their responses will be treated. In some patient reporting systems, certain categories of responses may be used to flag further investigation or treatments [16], [17]. In other patient reporting systems, a clear and unambiguous disclaimer may be required to indicate that the patient responses are for research purposes only and patients should report adverse symptoms to their general practitioner or consultant.…”

“…The increased use of the Internet by patients for healthcare information retrieval has aroused interest in the potential for using this medium to collect patient reported outcome information in the form of web-based questionnaires [16], [17], [18]. Patients undertaking on-line selfreporting need to be aware as to the exact nature of how their responses will be treated.…”

Software for Administering the National Cancer Institute�s Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events: Usability Study (Preprint)

“…Surveys are administered to patients via a web survey that presents the questions for each AE together on a page (based on prior research) [8] or an automated telephone interactive voice response (IVR) system. "Conditional branching" is included for AEs with more than one question; for example, if a patient is asked about the frequency of an AE and responds "never", then severity or interference with daily activities for that AE are not asked.…”