Patient-centered development and dissemination of MTCEducate.org, an online educational aid for patients with a rare cancer.
Authors: Sophia Williams-Perez, Julie Ann Sosa, Mark E. Zafereo, Maria E. Cabanillas, Anne K. Brinkman, Steven G. Waguespack, James D. Alexander, Viola B. Leal, Robert J. Volk, Mimi I-Nan Hu, Elizabeth G. Grubbs
Journal: Journal of Clinical Oncology (2024)

e13655 Background: Patients with rare cancers are subject to clinical vulnerability due to limited access to expert clinicians, equivocal treatment options, and a lack of accessible, reliable information. Medullary thyroid cancer (MTC) is a rare cancer often characterized by an advanced, progressive, chronic disease state for which there is clinical equipoise in treatment decisions. In a previous needs assessment, we learned from MTC patients, their caregivers, and treating physicians about the desire for education at each disease stage and strategies to convey patients' priorities to clinicians. Here, we report the patient-centered development of a novel online educational resource and decision aid, MTCEducate.org, its dissemination, and an analysis of its usability and acceptability. Methods: Working with a stakeholder group of MTC patients, caregivers, and clinicians, we used our prior needs assessment results to guide development and refinement of MTCEducate.org, including storyboarding and iterative patient feedback. The finalized site was strategically promoted through patient support organizations, a patient-run Facebook group, the American Thyroid Association, multiple conferences, and a robust MTC Registry listserv. Site metrics were assessed via Google Analytics, and site usability and acceptability were evaluated via an online survey with Likert scale questions. Results: MTCEducate.org underwent 5 rounds of patient feedback with 11 patients total to achieve saturation and finalization. Over its first 9 months, the site had 1878 unique visitors; of these, 65% used a mobile device to visit the site, and 35% used a desktop computer or tablet. Visitors accessed the site most often via direct emails or newsletters (49%) and Facebook (49%). Seventy-one visitors fully completed the site usability and acceptability survey. Most respondents identified as women (76%) and as non-Hispanic White (91%). The majority were ≥45 years old (87%) and had an associate’s degree or higher (93%). Most were MTC patients or survivors (91.8%), and most responded correctly to MTC knowledge–based questions about tumor markers (96%), lymph node dissection (94%), and FDA-approved medications (71%). Most found the site easy to use (88%) and well-integrated (84%), and most could learn to use it quickly (86%) and confidently (81%). Conclusions: Patients, especially those with rare tumors, need trustworthy educational and decision aids that provide evidence-based, reliable information and support shared decision-making. Using a patient-centered approach, we created a product whose multipronged deployment reached a unique audience. The site’s visitors’ lack of racial and ethnic diversity as well as their advanced educational status underscores the need to understand preferred access, communication, and educational resources desired by underrepresented populations.