Global Healthy Living Foundation Nyack, NY, United States
Daniel Hernandez1, Julio Bravo2, Juan Maya Villamizar3, William Benjamin Nowell1, Oscar Soto-Raices4, Angel Tapia5, Guillermo Valenzuela6 and Shilpa Venkatachalam7, 1Global Healthy Living Foundation, Nyack, NY, 2Novant, Winston-Salem, NC, 3Rheumatology Center of Palm Beach, PLLC, Boca Raton, FL, 4Fundación FER, San Juan, PR, 5Global Healthy Living Foundation, Upper Nyack, NY, 6Guillermo Valenzuela MD PA/ IRIS Rheumatology, Plantation, FL, 7Global Healthy Living Foundation, New York, NY
Background/Purpose: There is little research on rheumatoid arthritis (RA) in the US Hispanic population (< 0.2% of publications on RA indexed in PubMed.gov), but it is known for other conditions that outcomes improve when Hispanic patients' physicians are native Spanish speakers. We are exploring the potential impacts of Spanish language-first (rather than translated) educational materials on RA on diagnosis, treatment, and quality of care for Hispanic people with RA. We created a patient advisory board to inform this research, recommend relevant patient-reported outcomes (PROs), and assist with evaluating Spanish language-first patient education on RA. Our goals include understanding Hispanic RA patient journeys in the US, how Hispanic individuals educate themselves about RA, and ensuring appropriateness of education created in this study.
Methods: Participation was invited by site investigators and via the landing page of CreakyJoints Español and WhatsApp communications from that page. Study investigators defined meeting topics in advance, incorporating participants' self-identified issues over time. Meetings were facilitated in Spanish by a study staff member who emphasized empowerment to help Spanish speakers with RA. Meetings were via phone and online conferencing, as patients preferred. Patients received a minimal stipend per meeting attended, early access to CreakyJoints Español education, and credit as advisory board members.
Results: Before participation, patients had turned to family/friends for information about RA and were encouraged to consider home remedies and putative cures rather than to seek care from a physician of any specialty. Patients were directed to online support groups, which promoted and sometimes sold such home remedies and "cures." Members of the advisory board related it was difficult to find what they now consider more trustworthy information leading them to understand that RA has no cure yet and remission is the goal of treatment. When textual material was considered useful, it used conversational, idiomatic Spanish. Common needs identified were the importance of finding Spanish-speaking physicians, navigating insurance reimbursement for disease-modifying anti-rheumatic drugs (DMARDs), and having trustworthy information regarding DMARDs, food/diet, exercise, and home remedies for RA (Table). The emotional impact of RA, with patients wanting to feel they were still seen as strong by their families was also a key theme. When trustworthy information in Spanish was found, it was often confusing; patients preferred audio-visual (videos, podcasts, graphics, comics) over textual material and participated in creating educational videos that will be shown during presentation of this abstract.
Conclusion: Hispanic patients with RA expressed a need for earlier access to culturally relevant audio-visual Spanish-language RA education and support for emotional impacts of chronic illness. Further research on audio-visual Spanish language education for RA is warranted; we have begun creating patient videos for that purpose. Disclosures: D. Hernandez, None; J. Bravo, None; J. Maya Villamizar, None; W. Nowell, Global Healthy Living Foundation, AbbVie Inc., Amgen, Eli Lilly; O. Soto-Raices, None; A. Tapia, None; G. Valenzuela, None; S. Venkatachalam, None.
