JMIR Publications

ABSTRACT

Background:

Patients with rare cancers experience clinical vulnerability owing to limited expert clinicians, equivocal treatment options, and a lack of accessible, reliable information. Medullary thyroid cancer (MTC) is a rare cancer characterized by an advanced, progressive, chronic disease state that often has clinical equipoise in treatment decisions.

Objective:

In a previous needs assessment study, an MTC stakeholder group of patients, caregivers, and clinicians identified needs for patient and caregiver education regarding each disease stage and for effective strategies for patient-clinician communication. Here, we report the patient-centered development of a novel online educational resource and patient decision aid, MTCEducate.org, as well as its online dissemination and usability and acceptability analysis.

Methods:

Working with the same stakeholder group as in the needs assessment and additional patient input, we used the identified needs to guide the development and refinement of MTCEducate.org, e.g., by using storyboarding with iterative feedback. The finalized site was strategically promoted through patient support organizations, social media platforms, national conferences, the American Thyroid Association, and a robust MTC Registry listserv. Site metrics were assessed via Google Analytics for one year following site publication, and site usability and acceptability were evaluated via a confidential survey embedded within the website.

Results:

MTCEducate.org underwent six rounds of stakeholder feedback before its online dissemination in April 2023. Over the first year after publication, the site had 2079 unique visitors and 376 return users. To access the site, 63.6% of visitors used a mobile device, and 36.5% used a desktop computer or tablet. The site had visitors from 69 countries; most visitors (69.3%) were from the United States. Visitors accessed the site most often via direct links found in emails, newsletters, or X posts (51.6%), followed by Facebook (44.8%). Seventy-six visitors fully completed the site usability and acceptability survey. Most respondents identified as women (73%), non-Hispanic (92%) and White (96%). Most respondents were ≥45 years (87%), had an associate’s degree or higher (92%), and were MTC patients or survivors (92%). Most respondents correctly answered MTC knowledge–based questions about tumor markers (96%), lymph node dissection (93%), and Food and Drug Administration–approved medications (73%). Most respondents found the site easy to use (88%) and well-integrated (84%) and indicated that they could learn to use it quickly (86%) and confidently (81%).

Conclusions:

Using a patient-centered approach, we created MTCEducate.org, an online patient decision aid, whose multipronged deployment reached an international audience. MTCEducate.org’s format and content were well received and had high usability and acceptability. The site visitors’ lack of racial and ethnic diversity and their advanced educational status underscore the need to understand the preferred access and communication styles and educational resources desired by underrepresented populations.