The Telemedicine for Patients With Inflammatory Bowel Disease (TELE-IBD) Clinical Trial: Qualitative Assessment of Participants’ Perceptions

Abstract

BackgroundInflammatory bowel disease (IBD), comprising Crohn disease and ulcerative colitis, affects 1 to 3 million people in the United States. Telemedicine has shown promise in IBD. The objective of this study, telemedicine for patients with IBD (TELE-IBD), was to compare disease activity and quality of life (QoL) in a 1-year randomized clinical trial of IBD patients receiving telemedicine versus standard care. Treatment groups experienced improvements in disease activity and QoL, but there were no significant differences between groups. Study adherence to the text-based intervention was less than 80%, the targeted goal.ObjectiveTo understand adherence to remote monitoring, the goal of this qualitative assessment was to obtain TELE-IBD trial participants’ perceptions, including their recommendations for future monitoring.MethodsIn this study, patients attending 3 tertiary referral centers with worsening IBD symptoms in the previous 2 years were eligible for randomization to remote monitoring via SMS text messages (short message service, SMS) every other week, weekly, or standard care. Participants (n=348) were evenly enrolled in the treatment groups, and 259 (74.4%) completed the study. For this study, a purposive sample of adherent (N=15) and nonadherent (N=14) patients was drawn from the TELE-IBD trial population. Adherence was defined as the completion of 80% (278/348) or more of the weekly or every other week self-assessments. Semistructured interviews conducted by phone surveyed (1) the strengths and benefits of TELE-IBD, (2) challenges associated with using TELE-IBD, and (3) how to improve the TELE-IBD intervention. Interviews were recorded, professionally transcribed, and coded based on a priori concepts and emergent themes with the aid of ATLAS.ti, version.7 qualitative data analysis software.ResultsParticipants' discussions centered on 3 elements of the intervention: (1) self-assessment questions, (2) action plans, and (3) educational messages. Participants also commented on text-based platform, depression and adherence, TELE-IBD system in place of office visit, and their recommendations for future TELE-IBD systems. Adherent and nonadherent participants prefer a flexible system that is personalized, including targeted education messages, and they perceive the intervention as effective in facilitating IBD self-management.ConclusionsParticipants identified clear benefits to the TELE-IBD system, including obtaining a better understanding of the disease process, monitoring their symptoms, and feeling connected to their health care provider. Participants’ perceptions obtained in this qualitative study will assist in improving the TELE-IBD system to be more responsive to patients with IBD.

Adaptation of TECCU App Based on Patients´ Perceptions for the Telemonitoring of Inflammatory Bowel Disease: A Qualitative Study Using Focus Groups

“…During the successive focus groups, three major themes emerged: the usability of the web platform, the communication process, and the platform content. Importantly, some of the themes, categories, and codes that emerged were similar to those identified in other qualitative studies on IBD patients [30,31,45]. Different models have been implemented to identify the factors related to the patients´intention to use new eHealth tools.…”

“…Lastly, the use of a purposive sampling method could hinder the generalizability of the data obtained. Yet, as we included different populations of patients, many emerging themes agreed with those generated in other studies [30,31,45]. This approach also allowed us to maximize the information gained from key informant patients, which guided further adaptations in the TECCU app.…”

“…Among the barriers to the wider implementation of eHealth, there is a disconnection between the users and developers of eHealth systems with attrition rates still high despite the continued adaptation of web platforms over recent years. The patient perspectives reported in this paper could orientate the design of future apps for IBD management, particularly since a few studies have examined IBD patient preferences about telemonitoring [30,31,45].…”

“…In relation to the usability of the platform, patients wanted to have quick and flexible access for telemonitoring apps. They were reluctant to answer excessive close-ended questionnaires, and they preferred to receive continuous follow-up and personalized feedback adapted to their particular evolution, which is similar to patients in other studies [30,45]. In this sense, we maintained the questionnaires to classify the patients' health status, but we also adapted simple and validated PROs previously used for telemonitoring of IBD patients [17,18,[40][41][42][43][44].…”

“…Accordingly, incorporating patients in the design, development, and implementation of eHealth will potentially improve patient engagement with a remote follow-up [29]. Recent efforts have been made to assess patient perceptions and other issues associated to telemonitoring adherence in IBD [30,31].…”