Design and evaluation patient portal for patients with HTLV-1

Patient portals are now considered an integral part of medical care. The aim of this study was to design and evaluate a patient portal for individuals with human T-lymphotropic virus type 1 (HTLV-1) to provide information about their health status. This practical cross-sectional study was conducted by using the Delphi technique at Mashhad University of Medical Sciences (Northeast Iran). First, an open-ended systematic review was conducted in the PubMed, Scopus, Embase, and Web of Science databases. A questionnaire about the functions of the patient portal was then developed based on the systematic reviews. A multidisciplinary working group carried out the Delphi technique with 20 participants from the fields of neurology, immunology, health information management, and medical informatics. The patient portal was designed based on the features identified in the Delphi session. For evaluation, the researchers visited the HTLV-1 clinic and selected 20 patients based on available samples. These patients then evaluated the patient portal using the System Usability Scale (SUS), while six professionals evaluated the portal using the Nielsen heuristic questionnaire. The developed portal includes six structural functions: Home Page, Patient Profile, Care Team, Educational Materials, Contact Us, and About Us. The key features identified in the survey questionnaire completed by patients were appointment reminders (93.3%), appointment scheduling (90%), requests for medication prescriptions (83.3%), and viewing test results (70%), among other things. The SUS results showed that users found the portal user-friendly, useful, and efficient. The final SUS score was 75.77%, indicating acceptable system usability. The development and evaluation of the HTLV-1 patient portal demonstrated its potential to enhance patient engagement and streamline healthcare management. By incorporating key features such as appointment scheduling, prescription requests, and access to test results, the portal addresses essential patient needs. Future improvements should focus on refining the portal based on user feedback and evaluating its long-term impact on patient care.