Web-Based Return of Individual Patient-Reported Outcome Results Among Patients With Lymphoma: Randomized Controlled Trial

Abstract

Background There has been a cultural shift toward patient engagement in health, with a growing demand from patients to access their results. Objective The Lymphoma Intervention (LIVE) trial is conducted to examine the impact of return of individual patient-reported outcome (PRO) results and a web-based self-management intervention on psychological distress, self-management, satisfaction with information, and health care use in a population-based setting. Methods Return of PRO results included comparison with age- and sex-matched peers and was built into the Patient-Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship registry. The self-management intervention is an adaptation of a fully automated evidence-based intervention for breast cancer survivors. Patients with lymphoma who completed the web-based questionnaire were equally randomized to care as usual, return of PRO results, and return of PRO results plus self-management intervention. Patients completed questionnaires 9 to 18 months after diagnosis (T0; n=227), 4 months (T1; n=190), 12 months (T2; n=170), and 24 months (T3; n=98). Results Of all invited patients, 51.1% (456/892) responded and web-based participants (n=227) were randomly assigned to care as usual (n=76), return of PRO results (n=74), or return of PRO results and access to Living with lymphoma (n=77). Return of PRO results was viewed by 76.7% (115/150) of those with access. No statistically significant differences were observed for psychological distress, self-management, satisfaction with information provision, and health care use between patients who received PRO results and those who did not (P>.05). Use of the self-management intervention was low (2/76, 3%), and an effect could therefore not be determined. Conclusions Return of individual PRO results seems to meet patients’ wishes but had no beneficial effects on patient outcome. No negative effects were found when individual PRO results were disclosed, and the return of individual PRO results can therefore be safely implemented in daily clinical practice. Trial Registration Netherlands Trial Register NTR5953; https://www.trialregister.nl/trial/5790 International Registered Report Identifier (IRRID) RR2-10.1186/s13063-017-1943-2

A Narrative Review on the Collection and Use of Electronic Patient-Reported Outcomes in Cancer Survivorship Care with Emphasis on Symptom Monitoring

“…After completing ePROMs, patients and health care practitioners (HCPs) might receive (visualized) feedback. Feedback can be personalized comparing individual results with (1) their previous results; (2) with patients similar to them; or (3) with a normative population [ 15 , 16 , 17 ]. By being able to compare their own scores with a person of the same age and sex without cancer, a patient might be able to better interpret his/her own functioning.…”

The Effects of Patient-Reported Outcome Screening on the Survival of People with Cancer: A Systematic Review and Meta-Analysis

“…In total, 14 reports were identified as potentially eligible and underwent a full text review. Of these, six [ 26 , 27 , 28 , 29 , 30 , 31 ] were excluded, mainly because the outcomes of interest in this review were not measured or because the types of intervention or study aims were not eligible for our study question ( Table S1 ). Overall, six studies [ 32 , 33 , 34 , 35 , 36 , 37 ] were included in our systematic review, to which two follow-up publications [ 38 , 39 ] were added for the meta-analysis.…”

Physicians’ Perceptions of Clinical Utility of a Digital Health Tool for Electronic Patient-Reported Outcome Monitoring in Real-Life Hematology Practice. Evidence From the GIMEMA-ALLIANCE Platform

“…The authors found that the majority of patients (84%) were willing to use the portal; however, they also observed that the completion of ePROs decreased over time, mainly because of the patient’s forgetfulness, and suggested ways to increase long-term participation rates ( 19 ). In another recent study, 227 lymphoma and chronic lymphocytic leukemia patients who completed web-based PRO questionnaires were randomized to care as usual (CAU), or to CAU plus return of PRO results (with or without a web-based self-management intervention) ( 20 ). No negative effects, for example in terms of psychological distress, were observed when individual PRO results were returned to patients, and authors concluded that this approach can be safely implemented in routine care practice ( 20 ).…”

“…In another recent study, 227 lymphoma and chronic lymphocytic leukemia patients who completed web-based PRO questionnaires were randomized to care as usual (CAU), or to CAU plus return of PRO results (with or without a web-based self-management intervention) ( 20 ). No negative effects, for example in terms of psychological distress, were observed when individual PRO results were returned to patients, and authors concluded that this approach can be safely implemented in routine care practice ( 20 ).…”

“…The recent coronavirus disease pandemic has further boosted the adoption of digital health tools that could facilitate remote patient monitoring during emergencies, making ePROs even more critical in enhancing patient-centered care. However, implementation of ePRO monitoring in the routine care of patients with hematologic malignancies has been less documented in the literature ( 18 ), and only recently have we seen valuable evidence in this area ( 19 , 20 ). In any case, there is a paucity of information about users’ perceptions of the clinical utility of digital health tools in routine care.…”