Background/Purpose: Email may be a promising approach to expose people with lupus, especially newly diagnosed patients, to educational information, tools, and resources on lupus self-management skills. The Lupus Foundation of America developed an educational email series called Take Charge to increase knowledge of self-management skills among newly diagnosed people with lupus. This study aimed to evaluate satisfaction and usability issues with Take Charge to help improve the email series.

Methods: Six emails containing information on lupus self-management skills were distributed weekly to participants affected by lupus. Skills ranged from coping and communications to medication and symptom management. A post-series survey was distributed to users who opened at least one message of series, and semi-structured phone interviews were conducted among a subset of these users to obtain feedback on functionality, content, and design of the email series. The post-series survey measured users’ exposure to information on lupus self-management skills during the series and actions taken (self-management skills attempted) after exposure to email content. The phone interviews provided in-depth insight on users’ perceptions of the design and branding of the series, and on the clarity, understandability, relevance, and appeal of its contents.

Results: Usability testing was conducted with 13 Take Charge participants (users) —all participants completed the post-series survey and five completed phone interviews. Sixty-nine percent of users reported trying at least one self-management skill presented in the series. Of the six self-management skills presented in the series, 46% of users said they prepared questions for their next doctor’s appointment (this was the most attempted skill reported among users). In general, users liked that the series was short, simple, and easy to understand. Users stated that weekly distribution of the emails was an appropriate frequency to prompt them to take action. The email content was also empowering and motivating, particularly the graphics and tone. Users who completed phone interviews could not tell that the series was sent from lupus health educators, which they all thought was an important feature to highlight in the design, especially for newly diagnosed participants. Users recommended the series provide ways to connect with other people with lupus and more in-depth information, such as information on lupus treatment, research, and financing lupus care.

Conclusion: Usability testing for Take Charge provided valuable insight on the use of emails to expose people with lupus to information on lupus self-management skills and prompt them to take action in the management of their care. While user satisfaction was high, usability testing also revealed important issues to enhance the Take Charge email series. Overall, email series show promise as a feasible method to deliver patient education. Future iterations of Take Charge will be developed and tested for ability to increase knowledge of self-management skills among people with lupus.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/development-and-usability-testing-of-take-charge-an-email-series-to-increase-knowledge-of-self-management-skills-in-people-with-lupus/