Introduction Electronic patient-reported outcomes (ePRO) are increasingly recognized in health care, as they have been demonstrated to improve patient outcomes in cancer, but have been less studied in rare hematological diseases. The aim of this study was to develop and test the feasibility of an ePRO system specifically customized for aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH). Methods After performing a user-centered design evaluation an ePRO system for AA and PNH patients could be customized and the application was tested by patients and their medical teams for 6 months. Symptom-reporting triggered self-management advice for patients and prompts them to contact clinicians in case of severe symptoms, while the medical team received alerts of severe symptoms for patient care. Results All nine included patients showed a high adherence rate to the weekly symptom-reporting (72%) and reported high satisfaction. The system was rated high for usage, comprehensibility, and integration into daily life. Most patients (78%) would continue and all would recommend the application to other AA/PNH patients. Technical performance was rarely a barrier and healthcare providers saw ePRO-AA-PNH as a useful supplement, but the lacking integration into the hospital information system was identified as a major barrier to usage. Conclusion An ePRO system customized for AA and PNH was feasible in terms of adherence, satisfaction, and performance, showing a high potential for these rare conditions in terms of data collection and patient guidance. However, the integration into clinical workflows is crucial for further routine use. Trial registration ClinicalTrials.gov NCT04128943.

Purpose: Electronic (e) patient reported outcomes (PROs) have been shown to improve the quality of life and survival in chemotherapy treated advanced cancer patients. We hypothesized that multidimensional ePRO centered approach could improve symptom management, streamline patient flow, and optimize the use of healthcare resources. Methods: In this multicenter trial (NCT04081558), colorectal cancer (CRC) patients receiving oxaliplatin-based chemotherapy as adjuvant or in the first or second line setting in advanced disease were included in the prospective ePRO cohort while a comparative retrospective cohort was collected from the same institutes. The investigated tool consisted of a weekly e-symptom questionnaire integrated to an urgency algorithm and laboratory value interface, which generated semi-automated decision support for chemotherapy cycle prescription, and individualized symptom management. Results: Recruitment to the ePRO cohort occurred 1/2019-1/2021 (n=43). The comparator group (n=194) consisted of patients treated in the same institutes 1-7/2017. The analysis was limited to adjuvant treated (n=36 and n=35). The feasibility of the ePRO follow-up was good with 98% reporting easy usage and 86% improved care, while health care personnel valued the easy use and logical workflow. In the ePRO cohort, 42% needed a phone call before planned chemotherapy cycles while this was 100% in the retrospective cohort (p=1.4e-8). Peripheral sensory neuropathy was detected significantly earlier with ePRO followed (p=1e-5) but did not translate to earlier dose reduction, delays, or unplanned therapy termination compared to the retrospective cohort. Conclusion: The results suggest that the investigated approach is feasible and streamlines workflow. Earlier symptom detection may improve the quality in cancer care.

Purpose Electronic (e) patient-reported outcomes (PROs) have been shown to improve the quality of life and survival in chemotherapy treated advanced cancer patients. We hypothesized that multidimensional ePRO centered approach could improve symptom management, streamline patient flow, and optimize the use of healthcare resources. Methods In this multicenter trial (NCT04081558), colorectal cancer (CRC) patients receiving oxaliplatin-based chemotherapy as adjuvant or in the first- or second-line setting in advanced disease were included in the prospective ePRO cohort, while a comparative retrospective cohort was collected from the same institutes. The investigated tool consisted of a weekly e-symptom questionnaire integrated to an urgency algorithm and laboratory value interface, which generated semi-automated decision support for chemotherapy cycle prescription and individualized symptom management. Results Recruitment to the ePRO cohort occurred 1/2019–1/2021 (n = 43). The comparator group (n = 194) consisted of patients treated in the same institutes 1–7/2017. The analysis was limited to adjuvant treated (n = 36 and n = 35). The feasibility of the ePRO follow-up was good with 98% reporting easy usage and 86% improved care, while health care personnel valued the easy use and logical workflow. In the ePRO cohort, 42% needed a phone call before planned chemotherapy cycles, while this was 100% in the retrospective cohort (p = 1.4e−8). Peripheral sensory neuropathy was detected significantly earlier with ePRO followed (p = 1e−5) but did not translate to earlier dose reduction, delays, or unplanned therapy termination compared to the retrospective cohort. Conclusion The results suggest that the investigated approach is feasible and streamlines workflow. Earlier symptom detection may improve the quality in cancer care.

Background Chemotherapy cycle prescription is generally carried out through a manual process. ICT tools with data analytics could streamline this process and limit human errors. Methods A one-arm multicenter prospective clinical trial ECHO 7/2019-1/2021 (NCT04081558) investigated the use of a novel Kaiku Health ePRO tool in cancer care. The most important patient inclusion criteria were colorectal cancer (CRC) planned to be treated with oxaliplatin-based chemotherapy as an adjuvant therapy or in the first or second line setting of advanced disease, age ≥18 years, ECOG performance score of 0-2, and internet access. A decision support tool consisting of a digital symptom monitoring, laboratory value interface, and treatment schedule integration for a semi-automatized chemotherapy cycle prescribing was created for the trial. Results The dataset included CRC patients (n=43) treated with doublet or triplet chemotherapy in adjuvant or metastatic setting, and 339 prescribed chemotherapy cycles. For the 77% of the new chemotherapy cycles, ePRO questionnaire data was available. 65% of cycles had symptom questionnaires grading at ≤ 1 while 67% of the cycles had laboratory values at pre-set range. The recommendation by the tool for a new chemotherapy cycle was (green/go) in 42.8%, two (yellow/evaluate) in 24.5%, and three (red/hold) 32.7% of the cycles. HCPs valued the improved workflow, faster patient evaluation, and direct messaging option the most. Conclusions In this study, we investigated the feasibility of a decision support system in chemotherapy cycle pre-evaluation and prescription. The study shows that the functionalities of the investigated tool were feasible, and an automated approach to chemotherapy cycle prescription was possible for nearly half of the cycles. Trial registration: NCT04081558 9th Sep 2019

Introduction: Electronic patient-reported outcome (ePRO) systems have demonstrated to improve patient outcome in cancer, but have not yet been evaluated in patients with aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH). This pilot study evaluated the feasibility of an ePRO monitoring, self-management advice and warning system customized for AA and PNH patients.Methods: After adapting an ePRO system to the needs of AA and PNH patients (ePRO-AA-PNH), the application was tested by patients and their medical team for 6 months. Based on a predefined algorithm symptom reporting triggered self-management advice and prompts to contact clinicians in case of severe symptoms. Meanwhile the medical team could monitor ePROs in real-time and receive alerts of severe symptoms electronically. Results: Nine patients completed the study, showing a high adherence rate to the weekly symptom-reporting (72%), which decreased from 91 % to 53 % over the study period. Satisfaction was high: ePRO-AA-PNH was found easy to use, to understand and to integrate into daily life. Most patients (78%) would continue and all would recommend the application to other AA/PNH patients. Technical performance was rarely a barrier and healthcare providers saw ePRO-AA-PNH as a useful supplement, but missed the integration to clinical workflows and the hospital electronic health records (EHR). Conclusion: An ePRO system customized for AA and PNH was feasible to patients and their medical team in terms of adherence, satisfaction and performance, showing a high potential for these rare and chronic conditions. However, the integration into clinical workflows and hospital EHR is crucial for routine use.Trial registration: ClinicalTrials.gov identifier: NCT04128943, October 16 2019, https://clinicaltrials.gov/ct2/show/NCT04128943