ACR Meeting Abstracts

ACR Meeting Abstracts

  • Home
  • Meetings Archive
    • 2023 ACR/ARP PRSYM
    • ACR Convergence 2022
    • ACR Convergence 2021
    • ACR Convergence 2020
    • 2020 ACR/ARP PRSYM
    • 2019 ACR/ARP Annual Meeting
    • 2018 ACR/ARHP Annual Meeting
    • 2017-2009 Meetings
    • Download Abstracts
  • Keyword Index
  • Advanced Search
  • Your Favorites
    • Favorites
    • Login
    • View and print all favorites
    • Clear all your favorites
  • Meeting Resource Center

Abstract Number: 0183

LupusConnect™: A 24/7 Online Lupus Support Community

Leticia Ocana, Ashley Holden and Daria McClamb, Lupus Foundation of America, Washington, DC

Meeting: ACR Convergence 2022

Keywords: Social support, Systemic lupus erythematosus (SLE)

  • Tweet
  • Email
  • Print
Session Information

Date: Saturday, November 12, 2022

Session Title: Patient Education/Community Programs Poster

Session Type: Poster Session A

Session Time: 1:00PM-3:00PM

Background/Purpose: A Lupus Foundation of America (LFA) National Needs Assessment Survey in 2015 with 3402 lupus patients and caregivers found that the number one need was social support and assistance coping with lupus. In response to the survey, the LFA, in partnership with Inspire, a healthcare social network, launched LupusConnect™ in 2017. LupusConnect™ is an online lupus support community where people can post and gain insight from others 24 hours a day, 7 days a week. To assess the impact of the online support groups, to advocate and educate others on the importance of such groups, a review of the data within LupusConnect™ was conducted to analyze the composition of its members and topic of discussions across demographic variables and geographic location.

Methods: In partnership with LFA, Inspire developed a dashbard for LupusConnect™ which tracks the metrics of its members. The dashboard collects data such as demographic information (race, gender, etc.), geographic location and community engagement. Data as of June 2022 was reviewed and included 18,043 members whom self-reported to have systemic lupus erythematosus (SLE).

Results: LupusConnect™ offers an innovative way for people with lupus to connect with others also impacted by the disease from anywhere in the world and at any time. Findings show that of the 18, 043 members, 58.4% members are female, 5.2% male and 36.4% did not specify a gender. Most of the membership is based in the United States (US) (85.5%) compared to non-US membership (14.5%).

During the COVID-19 pandemic, there was a 48% increase in membership in Year 3 and a 27% increase in membership in year 4 (Table 1). Data demonstrates that US members were consistent with their number of posts in the community despite the pandemic. However, the number of non-US posts increased during Years 3 and 4 which overlap with the COVID-19 pandemic (Table 2).

The top terms discussed in the posts remained similar between US members and non-US members (Table 3).

Conclusion: There is an ongoing need for online support group/forum where all people affected by lupus can interact with one another from anywhere in the world even when traditional in-person support groups are not available. No matter the geographic location of members, the top topics of the discussion posts of the support community are similar, indicating the utility of the online platform in relation to any rheumatic disease which serves to connect with others globally on their most pressing disease-related topics.

Supporting image 1

US and Non-US Membership

Supporting image 2

Number of Posts by US and Non-US Members

Supporting image 3

Popular Terms Discussed in the Posts


Disclosures: L. Ocana, None; A. Holden, None; D. McClamb, None.

To cite this abstract in AMA style:

Ocana L, Holden A, McClamb D. LupusConnect™: A 24/7 Online Lupus Support Community [abstract]. Arthritis Rheumatol. 2022; 74 (suppl 9). https://acrabstracts.org/abstract/lupusconnect-a-24-7-online-lupus-support-community/. Accessed May 27, 2023.
  • Tweet
  • Email
  • Print

« Back to ACR Convergence 2022

ACR Meeting Abstracts - https://acrabstracts.org/abstract/lupusconnect-a-24-7-online-lupus-support-community/

Advanced Search

Your Favorites

You can save and print a list of your favorite abstracts during your browser session by clicking the “Favorite” button at the bottom of any abstract. View your favorites »

© COPYRIGHT 2023 AMERICAN COLLEGE OF RHEUMATOLOGY

Wiley

  • Home
  • Meetings Archive
  • Advanced Search
  • Meeting Resource Center
  • Online Journal
  • Privacy Policy
  • Permissions Policies
  • Cookie Preferences