Gastroenterology Department, La Fe University and Polytechnic Hospital, 46026 Valencia, Spain.
CIBEREHD (Networked Biomedical Research Center for Hepatic and Digestive Diseases),28029 Valencia, Spain.
Int J Environ Res Public Health. 2020 Mar 13;17(6):1871. doi: 10.3390/ijerph17061871.
Despite the continuous adaptation of eHealth systems for patients with inflammatory bowel disease (IBD), a significant disconnection persists between users and developers. Since non-adherence remains high, it is necessary to better understand the patients' perspective on telemonitoring for IBD. Accordingly, this study aimed to adapt the TECCU telemonitoring app to the preferences and needs of IBD patients. A qualitative study was carried out using successive focus groups of IBD patients. Meetings were audio-recorded and a thematic analysis was employed until data saturation was achieved. The first group included patients who had used the TECCU App in a pilot clinical trial, and subsequent meetings included patients with Crohn's disease and ulcerative colitis recruited from the Spanish Confederation of patient associations. The information collected at each meeting guided consecutive changes to the platform. Data saturation was reached after three focus groups involving a total of 18 patients. Three main themes emerged: (1) platform usability, (2) the communication process, and (3) platform content. All participants indicated that TECCU is easy to use, permitting continuous and personalized feedback. According to patients´ perspectives, the platform was adapted to foster a flexible follow-up and shared decision-making using open and safe communication networks. Many participants appreciated the educational elements and, consequently, the app was connected to reliable and continuously updated webpages. IBD patients valued the usability and personalized monitoring offered by the TECCU App. Improvements in the messaging system and continuously updated educational content were introduced to address patients´ needs and favor their engagement.
尽管电子医疗系统不断适应用于炎症性肠病(IBD)患者,但用户和开发者之间仍存在显著脱节。由于不依从性仍然很高,因此有必要更好地了解患者对 IBD 远程监测的看法。因此,本研究旨在根据 IBD 患者的喜好和需求调整 TECCU 远程监测应用程序。
本研究采用 IBD 患者的连续焦点小组进行定性研究。会议进行了录音,并采用主题分析,直到达到数据饱和。第一组包括在试点临床试验中使用过 TECCU 应用程序的患者,随后的会议包括从西班牙患者协会联合会招募的克罗恩病和溃疡性结肠炎患者。每次会议收集的信息指导了平台的连续更改。
总共涉及 18 名患者的三次焦点小组会议达到了数据饱和。出现了三个主要主题:(1)平台可用性,(2)沟通流程,(3)平台内容。所有参与者都表示,TECCU 易于使用,可提供连续和个性化的反馈。根据患者的观点,该平台经过调整,通过开放和安全的沟通网络促进了灵活的随访和共同决策。许多参与者欣赏教育元素,因此,该应用程序与可靠且不断更新的网页相连。
IBD 患者重视 TECCU 应用程序提供的可用性和个性化监测。改进了消息系统和不断更新的教育内容,以满足患者的需求并促进他们的参与。