Accepted for/Published in: JMIR Formative Research
Date Submitted: Apr 1, 2020
Date Accepted: Sep 30, 2020
Adaptation and Evaluation of a Symptom Monitoring Digital Health Intervention for Relapsed/Refractory Multiple Myeloma Patients: Outcomes of a Pilot Implementation Study
ABSTRACT
Background:
Relapsed refractory multiple myeloma (RRMM) is a bone marrow cancer that requires systemic treatment, which often results in severe symptom burden. Recent studies have found that electronic patient-reported outcomes (ePRO) interventions implemented in the clinic setting have had positive outcomes for other oncology populations. Evidence for the efficacy of a similar approach is lacking for patients with RRMM.
Objective:
Recent recommendations for digital health interventions call for the publication of descriptions of iterative development processes, in order to improve reproducibility and comparability. The current study is an implementation pilot aiming to evaluate the acceptability and appropriateness of an ePRO intervention for patients with RRMM and explore its impact on clinic workflow.
Methods:
Eleven patients with RRMM were recruited from the John Theurer Cancer Center in Hackensack, NJ. Patients used a mobile app to report on 17 symptoms at four sessions, each a week apart. Patients could also report symptoms ad hoc. When reports met pre-defined thresholds, the clinic was alerted and patients received automated guidance. Study endpoints were assessed using qualitative and quantitative methods.
Results:
Nine patients (mean age = 69.7 years) completed the study. Overall, 83% (30/36) of weekly sessions were completed. Patients found the frequency and time required to complete reporting acceptable. All patients agreed that the app was easy to use understand. Providers felt the alerts they received required refinement. Patients and providers agreed it would be beneficial for patients to report for longer than 4 weeks. Patients felt that the training they received was adequate, but contained too much information for a single session. All patients found the symptoms tracked to be appropriate; providers suggested shortening the list. All patients understood how to use the app for weekly reporting, but had confusion about using it ad hoc. Providers felt the ad hoc feature could be removed. Neither patients nor providers viewed the in-app data reports, but agreed in their potential value. Patients reported benefitting from symptom reporting through increased awareness of their symptoms. Clinic staff reported that app alerts were too numerous and redundant. They had difficulty responding to alerts within their existing workflow, partially because the data was not integrated into the EMR.
Conclusions:
Overall, the intervention was found to be acceptable and appropriate for RRMM patients. Points of friction integrating the intervention into the clinic workflow were identified. Clinic staff provided recommendations for how address these issues. Once such modifications are implemented, ePRO data from RRMM patients could be used to inform and improve clinical research and care. This study underlines the importance of an iterative approach to implementation that includes all stakeholders in order to ensure successful adoption.
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