ACR Meeting Abstracts

ACR Meeting Abstracts

Abstract Number: 1269

The Development Of a Mobile Application For Adolescents and Young Adults With Lupus

Natasha M. Ruth1, Deborah M. Levy2, Andrea Regina3, Christy Taberner4, Edith M. Williams5 and Miriam Kaufman6, 1Pediatric Rheumatology, Medical University of South Carolina, Charleston, SC, 2Rheumatology, The Hospital for Sick Children and University of Toronto, Toronto, ON, Canada, 3Department of Psychology, The Hospital for Sick Children, Toronto, ON, Canada, 4Mohawk College, Toronto, ON, Canada, 5Institute for Partnerships to Eliminate Health Disparities, University of South Carolina, Columbia, SC, 6Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada

Meeting: ACR/ARHP Annual Meeting 2013

Keywords:

Session Information

Title: Pediatric Rheumatology - Clinical and Therapeutic Aspects II: Pediatric Systemic Lupus Erythematosus, Pediatric Vasculitis and Pediatric Myositis

Session Type: Abstract Submissions (ACR)

Background/Purpose:

Young adults with lupus need reliable disease-specific knowledge that includes information about lupus, the effect of lupus and lupus medication on their lives, and education about how their life choices affect their health.  In order to attain autonomy and adequately manage their condition, young adults with lupus must learn effective self-management and communications skills, and build a strong, supportive social network to assist their efforts.  The emergence of smartphones, devices that merge the functionalities of traditional mobile phones with computer capabilities, has created new opportunities for innovation by increasing point of care delivery of healthcare interventions.  The purpose of this study was to develop a lupus application for smartphones to improve the quality of life (QOL) and ease the difficult transition to adult care for adolescents and young adults with lupus.

Methods:

A team of researchers came together in Toronto, Canada in December of 2012 for a consensus conference that resulted in the development of The Lup. The team included two pediatric rheumatologists, one from the Medical University of South Carolina, United States and one from SickKids, Toronto, Canada.  These two medical centers were chosen based on the diverse ethnic background in these regions. Information technology experts consisting of two software development students and a full-time project leader through a partnership with iDeaWORKS (Mohawk College), adolescent medicine specialists, and adolescents and young adults with lupus were also included in the consensus conference. 

Results:

The weekend resulted in a dynamic plan for the conceptualization, development, and implementation of The Lup.  The app is designed to run on the iOS (Apple) operating system for iPhone, iPod Touch, and iPad with plans to eventually include Android and Windows platforms in order to reach patients that prefer these platforms.  The Lup was conceptualized as a patient-centered tool to better understand and manage lupus.  The app is equipped with tools to record demographic data and personal health information (if desired), provide medications reminders, facilitate social networking through the Lupus Foundation of America (LFA) Facebook page and Twitter feed, and provide information about lupus medications.  In addition, the app includes a dynamic symptoms report/tracker and mood tracker, and will allow communication of this collected data with the health-care team.  The app also includes a lupus support group locator, and multi-media peer-modeling examples using pre-existing LFA YouTube channel videos.  Teens (ie users) with lupus have vetted the graphics and appearance of the app, as well as potential functionalities throughout the active development and programming process.

Conclusion:

The app will be completed in August 2013.  The next steps of this innovative and exciting project will evaluate the feasibility and determine preliminary estimates of effectiveness of the mobile app to improve the QOL among adolescents and young adults with lupus. The Lup shows promise as the first mobile app designed specifically for adolescents with lupus.

Disclosure:

N. M. Ruth,
None;

D. M. Levy,
None;

A. Regina,
None;

C. Taberner,
None;

E. M. Williams,
None;

M. Kaufman,
None.

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