Background/Purpose: Each year, the Lupus Foundation of America’s (LFA) Health Education Specialists (HES) respond to thousands of national and international inquiries from people affected by lupus providing free and tailored non-medical support, disease education, and helpful resources. The vast majority of inquiries are submitted in English and Spanish languages. A team of four HES including two bilingual-bicultural HES respond to the inquiries by email, phone or mail. A review of the inquiry database was conducted to analyze the topics by language and country origin.

Methods: Demographic and inquiry information are collected using Salesforce, a cloud-based Customer Relationship Management (CRM) platform. HES tag each inquiry with topic(s) as applicable. Reports are generated from the database. Topics from the US inquiries by language and the non-US Spanish inquiries were compared.

Results: In 2022, the Lupus Foundation of America responded to a total of 2,402 inquiries from the US and 67 other countries. Eighty percent (n=1,907) of the inquiries were in English and 20% (n=495) were in Spanish. Data demonstrates that the majority of inquiries originated in the US and US Territories (78%), followed by Mexico (5%), India (2%), Colombia (2%) and Argentina (2%) (Graph 1). Graph 2 shows that while 37% of the Spanish-language inquiries originated from the US (n=181), a significant number also come from Mexico (n=98), Colombia (n=37), Argentina (n=29), and Peru (n=27), among other countries. Analysis of the topics show that there is little variation among the English- and Spanish- language inquiries and whether they are US or non-US inquiries. Chart 3 shows the ranking of the top five topics of inquiries by language and country of origin. Data shows that regardless of the language or origination of the inquiry, the top two topics are 1. resources and 2. living and coping. Topics for English-language inquiries from the US include diagnosis, support groups and physician referrals. Spanish-language inquiries (US and non-US) include support groups, treatment, diagnosis, physician referral and understanding lupus. There is a need for not only more lupus information but financial resources as evidenced by resources being a top topic across all languages.

Conclusion: The LFA HES fill an important knowledge gap by providing lupus non-medical support and resources in both English and Spanish to people in the US and around the world. English and Spanish language inquiries from within and outside the US show that the top topics discussed in the inquiries are similar and differ only in ranking, highlighting the similarities in the needs of people affected by lupus. These findings further support the organization’s goals of increasing language capabilities that meet the universal needs of people affected by lupus.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/meeting-the-educational-and-language-needs-of-the-lupus-community-a-snapshot-of-2022-lupus-inquiries/