Cutaneous T-cell lymphomas (CTCL) are a rare and heterogeneous group of non-Hodgkin lymphomas that primarily affect the skin. Given the rarity of CTCL and the limited number of treatment options available, clear, accessible, and high-quality patient education is essential to support informed decision-making and effective disease management.
In the United States, more than one in five individuals aged five and older speak a language other than English at home, with Spanish being the second most spoken. In such a multilingual population, culturally and linguistically appropriate resources are vital to promote patient safety, engagement, and improved outcomes. However, patient education materials in Spanish and other non-English languages are consistently less available and less comprehensible, contributing to worse health outcomes and reduced dermatology service utilization among Hispanic patients.
This study evaluated manufacturer websites and online, publicly available patient resources for all suggested systemic treatment regimens in the National Comprehensive Cancer Network Guidelines for Primary Cutaneous Lymphomas, including FDA-approved medications and those used off-label to treat stage IV CTCL. We assessed the frequency, accessibility, and quality of patient resources (including safety information, visual aids, and financial support materials) in English and non-English languages. Only a handful offered limited, lower-quality information in Spanish. No resources were available in languages other than English and/or Spanish.
These findings highlight a critical gap in multilingual CTCL patient education in the U.S. and emphasize the urgent need for equitable and linguistically inclusive patient resources as new therapies continue to emerge.
