Background/Purpose: Non-adherence to medical recommendations in childhood-onset systematic lupus erythematosus (cSLE) is estimated to be between 40-50%. For patients with cSLE, non-adherence results in increased hospitalizations, preventable disease damage, disease flares, and higher health care costs. Currently there are no published data regarding adolescent patients’ perspectives on the management of cSLE, including barriers to treatment adherence. The aim of this study was to characterize the adolescent’s perspective on the management of cSLE and its impact on their lives. 

Methods: Ten adolescents diagnosed with cSLE per ACR SLE classification criteria were recruited from a pediatric rheumatology clinic and cSLE patient registry. Participants’ characteristics are summarized in Table 1. Two separate focus groups were conducted and led by trained facilitators to discuss topics around living with cSLE and its management. The sessions were audio-taped, transcribed, and coded for themes by three independent coders.

Results: Focus group transcript analyses revealed seven major themes: 1) Barriers/Facilitators of treatment adherence, 2) Symptoms Impacting Daily Life, 3) Lack of Understanding/Knowledge about cSLE, 4) Impact on personal relationships, 5) Self-care and management, 6) Worry about the Future, and (7) Relationship/communication with healthcare providers. Adherence barriers included the number, taste, timing and side effects of oral medications. Adherence facilitators were desire to avoid being sick/in pain/hospitalized, use of pill boxes, reminder apps, and storage location of pills. Fatigue, pain, and mood significantly impacted daily life for these adolescents. All adolescents described difficulties at school, including absenteeism related to disease flares and hospitalizations, missed school work, bullying, and/or the general lack of awareness and understanding of cSLE among educators and peers. They emphasized the role of healthcare providers in helping increase schools’ awareness and understanding of cSLE. Future worries were quality of life, transition to college, and job opportunities. All adolescents wanted direct communication with, and between, their providers.

Conclusion: While adherence was identified as a significant problem, some adolescents also noted strategies to improve self-management. All adolescents desired increased knowledge/understanding from the public regarding cSLE, especially aimed at school advocacy. Important next steps are to identify modifiable factors, with the long-term goal of developing interventions to improve the overall well-being and self-management for adolescents with cSLE.

Table 1: Participant demographical and disease characteristics

¥SLEDAI 2K score from clinic visit preceding focus group session. Range of scores is 0-14 for participants.

‡dyslipidemia, hypovitaminosis D, ADHD, anti-phospholipid abs.