This year at the ACR Convergence 2022, the annual meeting of the American College of Rheumatology, the voices of Hispanic patients have not gone unnoticed by researchers. The Global Healthy Living Foundation (GHLF) conducted one study and collaborated with other scientists on another study exploring the distinct health journeys, perspectives, and needs of Hispanic patients with rheumatoid arthritis.
Exploring Patient Education Needs Study
The first study, “Exploring Patient Journeys and Education Needs of Hispanic Individuals with Rheumatoid Arthritis,” aimed to discover how Spanish-speaking patients with RA learn best in a world full of different media options — from newspapers to podcasts to online articles, videos, and beyond. By understanding how patients learn best, they can promote greater self-insight and empowerment for Hispanic patients with RA.
In addition, researchers set out to explore the potential impact of Spanish language-first (rather than translated) educational materials on RA diagnosis, treatment, and quality of care.
This question is important given the lack of information surrounding the Hispanic experience with rheumatoid arthritis. “It’s estimated that less than two percent of publications on this condition are published in medical journals,” study author and Director of Medical Affairs and Hispanic Outreach at GHLF, Daniel Hernandez, MD, notes. “Still, Hispanic patients often turn to family or friends for advice on managing their condition rather than seeking professional care.”
In fact, patients in the study cited the following unmet needs for better managing their RA:
- Finding Spanish-speaking physicians, or staff that is well-equipped to support through translation.
- Navigating insurance reimbursement for disease-modifying anti-rheumatic drugs (DMARDs)
- Having trustworthy information regarding DMARDs, food/diet, exercise, and home remedies for RA
- Having information on the emotional impact of RA (patients wanted to feel they were still seen as strong by their families)
Using a Hispanic patient and rheumatologist advisory board, the researchers explored the collaboration of education materials that could lead to a better quality of life among Hispanics, “who may have gone undiagnosed or treated incorrectly due to inadequate information and outreach,” Dr. Hernandez explains. The study results indicated that Hispanic RA patients prefer “audio-visual (videos, podcasts, graphics, comics) over textual materials.
In addition to assessing various Spanish-language education materials, the advisory board of Hispanic RA patients met weekly with GHLF staff to promote evidence-based RA information to the wider Hispanic community of RA patients. “The members have been retained at 100 percent and attended meetings more than expected, leading us to develop a poster for ACR, titled “We Became Advocates, Educators, and a Support System for Hispanic/Latino Patients with Rheumatoid Arthritis and Their Caregivers Through Involvement in a Virtual Patient Advisory Board,” on how these patients became patient leaders in their communities and online,” says Dr. Hernandez. “By treating patients as leaders-in-training and implementing cultural sensitivity into our patient education design, everything improved in our RA Hispanic community.”
Patient Perspectives Study
The second study, “Patient Perspective of Unique Support and Education Needs of Latinx/Latino(a)/Hispanic Rheumatoid Arthritis Patients: Implications for a Culturally Tailored and Disease Specific Intervention,” describes insights from interviewing Hispanic RA patients about several health-related topics. The study was headed by Anna Balakrishnan, LMSW, Social Work Researcher in the Inflammatory Arthritis Support and Education Programs, and Adena Batterman, MSW, LCSW, Senior Manager, Inflammatory Arthritis Support and Education Programs and Patient-Centered Qualitative Research at Hospital for Special Surgery (HSS).
Learning more about the unique needs of the Hispanic RA community is important because without such knowledge, how could health care providers create culturally tailored interventions?
And so, researchers set out to learn about patient perspectives by having a licensed bilingual social work researcher conduct interviews with Hispanic RA patients via Zoom in either English or Spanish, depending on the patient’s preference. So far, 17 patients have been interviewed and the following nine topics have emerged in the interviews:
- The impact of RA on emotional health (connected to pain, feelings of loss about roles and abilities, and stress)
- Willingness to seek mental health care
- Medication and illness beliefs affecting patients’ approach to RA management
- Essential features of a patient-provider relationship (trust, feeling cared for and heard, kindness, consistency)
- The value of participating in a support group (sharing, connection, and feeling less alone)
- The impact of RA on family (relationship dynamics, presence/absence, support)
- Preferences on outreach strategies (postal mail, referral source, phone calls, emails, and social media)
- Preferences on structure and format (group size, facilitator attributes, in-person or virtual)
- Experiences of systemic barriers to care
Having a greater appreciation and understanding of Hispanic RA patients’ perspectives and personal experiences with the nine topics above will allow researchers to implement such knowledge into future intervention programs. “Our aim is to identify unique education and support needs, as defined by [these] patients, as there is a gap in the literature in this area. This input will be integrated into critical elements of an intervention, including culturally tailored content areas, implementation, and outreach strategies,” write the study authors.
Zooming Out to All Spanish-Speaking Patients with Chronic Illness
The researchers hope to expand these studies beyond Hispanic patients with RA with “the goal is to expand to other disease states and languages in the not-so-distant future,” says Dr. Hernandez.
By gathering with health care providers and researchers, RA patients in the Hispanic community incorporated their values and perspectives into the research process. This partnership is mutually beneficial for researchers and patients alike because it promotes interventions that speak to the real-life experience of those with chronic illnesses.
Hispanic RA patients continue to be an underserved community experiencing health disparities relating to pain, fatigue, disability, and depression. Promoting health equity is not only moral, but it is also full of preventative potential since underserved communities are most vulnerable to disease and worse outcomes. In this way, we hope the above studies mark a new dawn where research continues to elevate the voices of underserved communities.
Be Part of Research with ArthritisPower
Join CreakyJoints’ patient-centered research registry and participate in voluntary studies about managing arthritis. Learn more and sign up here.
Almonacid Z, et al. “We Became Advocates, Educators, and a Support System for Hispanic/Latino Patients with Rheumatoid Arthritis and Their Caregivers Through Involvement in a Virtual Patient Advisory Board.” Arthritis & Rheumatology. November 2022. https://acrabstracts.org/abstract/we-became-advocates-educators-and-a-support-system-for-hispanic-latino-patients-with-rheumatoid-arthritis-and-their-caregivers-through-involvement-in-a-virtual-patient-advisory-board.