ObjectivesRoutinely assessed patient‐reported outcomes (PROs), such as quality of life (QOL), are important to supplement clinical cancer data but requires rigorous implementation. This study aims at depicting the implementation procedure and evaluating the feasibility of routine electronic PRO monitoring (ePRO) for collecting data supplementing the Austrian Myeloma Registry (AMR).MethodsIntegration of ePRO monitoring into clinical routine was planned according to the Replicating Effective Programs framework. QOL data were assessed regularly during treatment and aftercare at the hematooncological outpatient unit at the Medical University of Innsbruck with the EORTC QLQ‐C30/ +MY20 and the EQ‐5D‐5L. Feasibility and usability testing were performed via a multimethod approach.ResultsWithin the first year, 94.4% of the MM patients (N = 142, mean age 65.4, SD 11.8, 60% male) provided 748 PRO assessment time points overall. Patients and clinicians were satisfied with ePRO monitoring and indicated no to little disruption in clinical routine. Patient preference on assessment time points and completion frequency became evident.ConclusionsComplementing the AMR with ePRO data proved to be feasible. Our findings provide useful insights for healthcare providers considering introducing ePRO monitoring to their units for informing clinical registries as well as individualised feedback to patients alike.
This paper reports on an exceptional case of lupus erythematosus tumidus induced by bortezomib during the treatment of multiple myeloma.
Summary Patient-reported outcomes (PROs) have gained increasing importance in oncology. PROs can supplement medical treatment with important information about the patient’s quality of life (QoL), which is typically assessed using standardized questionnaires. PROs capture the symptomatology and functional impairments as perceived by the patient without further interpretation by another party. In this article, we describe how routinely assessed electronic PROs (ePROs) at the outpatient unit of the Department of Hematology Innsbruck complement the Austrian Myeloma Registry (AMR) and clinical routine. There is a broad body of literature showing that ePRO assessments can supplement patient–physician contact and help focus communication on clinically relevant issues that matter for the patient. Based on ePRO results, physicians can initiate clinical action such as referring patients to psycho-oncological treatment. Electronic PRO assessments might facilitate communication between healthcare providers among themselves but also between healthcare providers and patients, and make it possible to incorporate the patients’ point of view into treatment in a standardized way. The example depicted herein demonstrates how ePRO assessments can be integrated and used in routine monitoring and for psycho-oncological screening.
Background Patient portals offer the possibility to assess patient-reported outcome measures (PROMs) remotely, and first evidence has demonstrated their potential benefits. Objective In this study, we evaluated patient use of a web-based patient portal that provides patient information and allows online completion of PROMs. A particular focus was on patient motivation for (not) using the portal. The portal was developed to supplement routine monitoring at the Department of Internal Medicine V in Innsbruck. Methods We included patients with multiple myeloma and chronic lymphocytic leukemia who were already participating in routine monitoring at the hospital for use of the patient portal. Patients were introduced to the portal and asked to complete questionnaires prior to their next hospital visits. We used system access logs and 3 consecutive semistructured interviews to analyze patient use and evaluation of the portal. Results Between July 2017 and August 2020, we approached 122 patients for participation in the study, of whom 83.6% (102/122) consented to use the patient portal. Patients were on average 60 (SD 10.4) years old. Of patients providing data at all study time points, 37% (26/71) consistently used the portal prior to their hospital visits. The main reason for not completing PROMs was forgetting to do so in between visits (25/84, 29%). During an average session, patients viewed 5.3 different pages and spent 9.4 minutes logged on to the portal. Feedback from interviews was largely positive with no patients reporting difficulties navigating the survey and 50% of patients valuing the self-management tools provided in the portal. Regarding the portal content, patients were interested in reviewing their own results and reported high satisfaction with the dynamic self-management advice, also reflected in the high number of clicks on those pages. Conclusions Patient portals can contribute to patient empowerment by offering sought-after information and self-management advice. In our study, the majority of our patients were open to using the portal. The low number of technical complaints and average time spent in the portal demonstrate the feasibility of our patient portal. While initial interest was high, long-term use was considerably lower and identified as the main area for improvement. In a next step, we will improve several aspects of the patient portal (eg, including a reminder to visit the portal before the next appointment and closer PROM symptom monitoring via an onconurse).
BACKGROUND Patient portals offer the possibility to assess patient-reported outcome measures (PROMs) remotely and first evidence has demonstrated their potential benefits. OBJECTIVE In this study, we evaluated patients’ use of a web-based patient portal where patients can complete PROMs. The portal was developed to supplement routine monitoring at the Department of Internal Medicine V in Innsbruck. METHODS We included patients with cancer who were already participating in the monitoring at the hospital for usage of the patient portal. Patients were introduced to the portal and asked to complete questionnaires prior to their next hospital visits. We used system access logs and three consecutive semi-structured interviews to analyze patients’ usage and evaluation of the portal. RESULTS Between July 2017 and August 2020, we approached N=122 patients for participation in the study, of whom n=102 (83.6%) consented to use the patient portal. Patients were on average 60 (SD 10.4) years old. Of n=71 patients providing data at all study time points, n=26 (36.6%) patients consistently used the portal prior to their hospital visits. During an average session, patients viewed 5.3 different pages and spent 9.4 minutes logged on to the portal. Feedback from interviews was largely positive with no patients reporting difficulties navigating the survey and 50% of patients valuing the self-management tools provided in the portal. CONCLUSIONS Our study demonstrates how a patient portal can complement a routine PROM implementation at the hospital by reducing the burden of administration for the clinical team and offering an additional way for patients to engage with PROMs.
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