Pediatric Rheumatology Online Journal → July 2003 → Childhood Lupus→ Miscellaneous → Abstract #113

THE LUPUS LOOP: A COMMUNICATION AND SUPPORT TOOL FOR YOUTH WITH SYSTEMIC LUPUS ERYTHEMATOSUS (SLE)

J. L. Tekano,¹ D. A. Cabral,¹ L. B. Tucker.¹

¹Pediatric Rheumatology, British Columbia's Children's Hospital, Vancouver, BC, Canada

Introduction: The Pediatric Program at British Columbia's Children's Hospital follows 60 children and youth with SLE who live in geographically widespread areas and have limited opportunity for interaction and education between clinic visits. Increased peer support, communication, and education are likely to have a positive influence on self-esteem, knowledge, compliance with medical therapy, and decrease sense of isolation.
Objective: A quarterly newsletter, The Lupus Loop, was developed to facilitate communication between patients, and between patients and the health care team; and to offer a venue for youth to share their feelings and experiences about SLE.
Methods: Five issues published to date have been mailed to patients; a web page has been developed to allow web access. Each newsletter includes educational material from the specialty-nurse editor, personal letters from patients who have the opportunity to provide their addresses for direct personal correspondence with other patients if they desire, a question and answer section to a physician, and a current list of additional resources.
Results: Eleven patients have provided accounts of their personal experiences. A number of patients have contacted other patients as a result of reading the Loop, and have offered their links to the readership as a peer support resource. Ten readers are now communicating with each other through e-mail. Informal feedback has been positive; formal feedback regarding the other aims of the newsletter is underway and will be reported.
Conclusions: A mail-out newsletter provides a medium for universal communication to otherwise isolated pediatric lupus patients, and has facilitated multidirectional communications and support between patients and health care providers.