Robust Data Standardization and Management Using a Telehealth Platform in a Multidisciplinary Graft-Versus-Host (GVHD) Clinic

Introduction Medical Centers have increasingly adopted remote patient care via telehealth platforms potentially expanding access to medical care, including allogeneic hematopoietic cell transplant (allo-HCT) patients. At our institution, a focused multidisciplinary telehealth clinic, for the care of patients with GVHD, was established to increase patient access to multispecialty care. While these telehealth clinic visits adapted their documentation and physical exam to be conducted through a video camera, little is known about a systemic approach to collect and accurately document data for GVHD from a telehealth platform. Methods A Research Electronic Data Capture (REDCap) database was created and adapted for clinical and research purposes. Each patient had REDCap data entered per visit in near-real time (Fig. 1). The research team entered non-clinical data including date of visit, type of providers, age, performance status, and research samples if applicable, whereas the BMT clinician completed the sections of GVHD syndrome, organ involvement, severity, treatment, and response (Fig. 2). An at-home medical photos guideline was developed to assess skin, mouth, and range of motion. A patient-reported outcomes (PROMs) questionnaire was adapted electronically. An automated corticosteroid dose per kilogram was incorporated. We evaluated all GVHD-related telemedicine visits conducted in a single center from 01/22 to 12/22. Results A total of 78 GVHD-related visits were conducted via telehealth. The median number of clinic visits per patient was 1 (range 1-9) with a median number of medical providers of 1(range 1-5). The patients had a median age of 59 (range 25-73) and 60% were male (Table). Most of the patients had chronic GVHD/ interrupted syndrome with moderate and severe features. Approximately half of the patients were on systemic corticosteroids and two-thirds were taking 2-4 drugs for GVHD. A subset of patients provided photos of their range of motion, skin, and oral conditions, which were used for objective evaluation and GVHD scoring and grading (Fig. 3). A subset of patients completed the PROMs questionnaire that showed fatigue, difficulty sleeping, distress, and decreased general activity as the most common symptoms. Conclusions An adapted REDCap database obtained in near-real time for complex telehealth GVHD-related clinic visits was feasible and provided robust data for dual clinical and research purposes. Our efforts avoided lengthy retrospective chart reviews and incomplete reports. The use of a telehealth platform was not a barrier in our data collection and the patient's medical photos were used as a tool for clinical evaluation. We propose future collaborations with the clinical team for further customization and collaborative efforts in data standardization and management.