Patients and health care providers evaluated the use of an electronic patient-reported outcome (ePRO) intervention for use in a clinic setting for patients with relapsed or refractory multiple myeloma (RRMM).
A pilot study to assess the acceptability and appropriateness of the use of an app-based symptom reporting system for patients with relapsed or refractory multiple myeloma (RRMM) found that although patients found the app easy to use and understand, clinicians found that many improvements were needed.
“This study underlines the importance of a systematic and iterative approach to implementation that includes all stakeholders in order to ensure successful adoption,” the study authors wrote.
Previous research has shown that electronic patient-reported outcome (ePRO) interventions, which are electronic applications in which patients can track their disease symptoms to better inform clinicians about their status between clinic visits, in an oncology setting can improve patients’ health-related quality of life, reduce the need for emergency department and hospital visits, ensure continued chemotherapy adherence, and increase survival compared with patients receiving standard care.
MM almost always relapses or becomes refractory to care; thus, these patients generally need to receive chemotherapy and other oncology treatments for the entirety of their lives following diagnosis, which can create a number of toxicity issues.
The study published in JMIR Formative Research is the first to examine how useful and appropriate ePROs can be in improving care specifically for patients with RRMM.
“The results are intended to inform and provide guidance for future iterations of ePRO initiatives delivered in a clinic setting for this or a similar patient population,” wrote the investigators.
They analyzed the use of an ePRO interface (Medocity Home Health) for 9 patients with RRMM who receive treatment at John Theurer Cancer Center in Hackensack, New Jersey. Patients were given a training session on how to use the app and were instructed to document 17 common RRMM symptoms 1 day per week for a total of 4 weeks. The patients, in addition to 4 clinicians, were given questionnaires to assess their opinions on the usefulness of the app.
The mean (SD) age of the study participants was 69.7 (6.5) years, and 4 of the 9 (44%) were female. The patients had been living with an MM diagnosis for a mean (SD) of 10.9 (7.2) years and had been receiving treatment at John Theurer Cancer Center for 9.9 (7.5) years. Three (33%) of the patients were in their first disease relapse and the other 6 were in their second. All of the patients needed to receive therapy chronically and had to make frequent visits to the clinic.
The weekly sessions took an average of 4.5 minutes to complete, but patients reported that they perceived the time it took to complete each session to be about 19 minutes. However, all patients felt that the time required to complete each session and to document their symptoms once a week was acceptable and not burdensome.
Patients also reported that the app was easy to use and understand. In regard to training, which took between 20 and 60 minutes per patient, patients reported feeling equipped to use the app, but some felt that the amount of information presented during the 1 training session was overwhelming and should have been broken up into multiple sections.
Patients cited that they saw a benefit to using the app, saying that it allowed them to have an increased awareness of their symptoms.
Although clinicians reported that the app could be helpful, it needed improvements regarding alert notifications, which they felt were too frequent and often presented redundant information that they already were made aware of during clinic visits. Clinicians suggested that the app may present a greater benefit to patients who visit the clinic less frequently and thus have fewer points of contact with clinicians.
Clinicians reported that they did not find the app easy to incorporate into their existing workflow. Investigators suggested that intervention data could be integrated into a clinic’s already established electronic medical record system as a way to simplify integration.
Clinic staff also said that anxiety and sad feelings should be removed from the list of symptoms in order to make the information more relevant for them to utilize and to reduce reporting burden on patients.
“The design and development of an ePRO intervention for use in the clinic setting should take these factors into consideration and include the input of the end users along the way in order to create a program that can be successfully adopted and executed,” wrote the investigators.
Both patients and clinicians said that they would like to see if using the app for a longer period of time would be more beneficial.
Biran N, Koyyaté RA, Yucel E, et al. Adaption and evaluation of a symptom-monitoring digital health intervention for patients with relapsed and refractory multiple myeloma: pilot mixed-methods implementation study. JMIR Form Res. 2020;4(11):e18982. doi:10.2196/18982