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Abstract Number: 1461

Implementation, Feasibility and Acceptability of Take Charge, an Email Series to Increase Knowledge of Lupus Self-Management Skills

Karin Tse1, Mary Crimmings2, Mike Donnelly2, Reid Dossinger2, Lauren Metelski2 and Latifa Boyce2, 1Lupus Foundation of America, DC, WA, 2Lupus Foundation of America, WASHINGTON, DC

Meeting: ACR Convergence 2020

Keywords: Community programs, education, patient, Surveys, Systemic lupus erythematosus (SLE)

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Session Information

Date: Sunday, November 8, 2020

Session Title: Clinical Practice II (1457–1461)

Session Type: Abstract Session

Session Time: 10:00AM-10:50AM

Background/Purpose: The Lupus Foundation of America developed and launched an educational email series, Take Charge, to provide people with lupus educational information, tools and resources on lupus self-management skills to increase knowledge of self-management skills, particularly in newly diagnosed individuals (diagnosis within past 12 months). Topics include: managing day-to-day challenges, explaining lupus to others, building social support, identifying and tracking lupus symptoms, preparing questions for medical appointments, and managing medications. Related skills are: increased self-awareness, communication and coping skills, and symptom and medication management. This abstract describes initial implementation and assessment of feasibility and acceptability of Take Charge measured through email campaign analytics and a post-series survey.

Methods: 8 total messages were distributed weekly to self-subscribed participants through an online communications platform, Luminate Online. 6 of the 8 messages focus on self-management topics and present additional resources, including worksheets and trackers, to further develop skills. The series ends with a 9-question post-series survey programmed in Qualtrics and summary of additional lupus resources. Participants reported time of lupus diagnosis and all self-management skills tried through multiple choice, and rated how interesting and helpful the series was on a scale of 1-10, with 10 being the most interesting and helpful. Open-text responses elicited feedback on likes/dislikes of the series and topics for future inclusion. Cross-tabulation analysis was conducted in Qualtrics.

Results: Nearly 6,500 individuals subscribed to Take Charge, with 45,792 emails sent at an average email open rate of 44.5% and click-through rate to provided resources of 11.8%. 494 participants completed the post-series survey, with 22% (n=107) reporting being newly diagnosed in the past 12 months, 70% (n=347) diagnosed more than 1 year ago, and the remaining were not yet diagnosed, indirectly connected or not connected to lupus at all. Top reported skills tried after series participation were preparing questions for medical appointments (55%, n=268), identifying and tracking symptoms (48%, n=238), and developing a coping strategy (39%, n=190). Newly diagnosed individuals were significantly more likely (p< 0.05) to report preparing questions for appointments, identifying and tracking symptoms, building a social support network, and making an elevator speech on lupus compared to those diagnosed more than 1 year ago (Table 1). Participants rated the series an average of 7.83 for interesting content and 7.96 for helpfulness. Lifestyle topics, such as diet and exercise, were highly recommended.

Conclusion: Take Charge is feasible to distribute through email communication platforms such as Luminate Online, with open and click-through rates higher than industry standards. Take Charge appears acceptable in interest, helpfulness, and delivering actionable self-management skills to newly diagnosed individuals with lupus. Future updates should include additional topics and updated evaluation tools to measure changes in knowledge, such as pre-post testing.

Table 1. Self-management skills reportedly tried, by diagnosis status; *indicates p < 0.05


Disclosure: K. Tse, Lupus Foundation of America, 3; M. Crimmings, Lupus Foundation of America, 3; M. Donnelly, Lupus Foundation of America, 3; R. Dossinger, Lupus Foundation of America, 3; L. Metelski, Lupus Foundation of America, 3; L. Boyce, Lupus Foundation of America, 3.

To cite this abstract in AMA style:

Tse K, Crimmings M, Donnelly M, Dossinger R, Metelski L, Boyce L. Implementation, Feasibility and Acceptability of Take Charge, an Email Series to Increase Knowledge of Lupus Self-Management Skills [abstract]. Arthritis Rheumatol. 2020; 72 (suppl 10). https://acrabstracts.org/abstract/implementation-feasibility-and-acceptability-of-take-charge-an-email-series-to-increase-knowledge-of-lupus-self-management-skills/. Accessed March 28, 2023.
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