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Objectives The aims of this study are (1) to characterize factors influencing self-management behaviors and quality of life in adolescent and young adult (AYA) patients with childhood-onset systemic lupus erythematosus (cSLE) and (2) to identify barriers and facilitators of treatment adherence via focus groups. Methods AYAs with cSLE ages 12–24 years and primary caregivers of the adolescents participated in this study. Recruitment occurred during pediatric rheumatology clinic visits at a Midwestern children's hospital or the hospital's cSLE active clinic registry. Information about disease severity was obtained from patient health records. Pain and fatigue questionnaires were administered. Descriptive statistics were used to analyze data. Results Thirty-one AYA patients and caregivers participated in six focus groups. Ten major themes emerged from sessions; four were expressed both by the AYA and caregiver groups: knowledge deficits about cSLE, symptoms limiting daily function, specifically mood and cognition/learning, barriers and facilitators of adherence, and worry about the future. Themes unique to AYA participants included symptoms limiting daily functioning—pain/fatigue, self-care and management, impact on personal relationships, and health care provider communication/relationship. For caregiver groups unique themes included need for school advocacy, disruption of family schedule, and sense of normalcy for their adolescent. Conclusion AYAs with cSLE face a lifelong disease characterized by pervasive pain, fatigue, organ damage, isolation—social and/or physical—and psycho-socioeducational challenges. This study confirmed that continued psychosocial support, health information education, adherence interventions, and personalized treatment plans are necessary to increase self-management and autonomy in AYAs with cSLE.

Objective: Individuals with sickle cell disease (SCD) are at increased risk for complications from their disease during their adolescent and young adult (AYA) years. The risk of morbidity in AYA with SCD can be decreased with improved self-management. Existing self-management interventions typically focus on one aspect of self-management (e.g., adherence) and do not address factors that activate patients (knowledge, motivation, self-efficacy and social support) to self-manage. Sickle Cell Thrive (SCThrive) is a mixed in-person/online, technology-enhanced (use of a mobile app), group self-management intervention that targets patient activation. To determine the most clinically-significant intervention components, a qualitative study was conducted. Methods: Participants were 19 AYA (M age=17.05) with SCD who participated in individual semi-structured phone interviews after completing SCThrive. Interview content was coded using a grounded-theory approach to generate themes related to SCThrive's feasibility, acceptability, and motivation for and impact on self-management. Results: SCThrive was reported to be highly feasible due to the mixed in-person/online format and acceptable because they learned skills to manage SCD in a group of AYAs with SCD. Action planning and pain/mood tracking appeared to be key factors in motivating AYAs for self-management.Participants reported continuing to use self-management skills post-SCThrive (self-efficacy) including applying them to other domains of their lives (e.g., educational/vocational).Conclusions: Study results provide data that can be leveraged to enhance the feasibility, acceptability, and impact of SCThrive and other self-management interventions. Findings can also inform clinical and mHealth interventions to increase self-management in this population.

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Background: In Childhood-Onset Systemic Lupus Erythematosus (cSLE), poor medication adherence rates are very high. Interventions targeting this problem in cSLE are limited thus effective interventions are needed. The objective of this study is to examine the feasibility and acceptability an intervention (automated digital reminders + personalized prescribed treatment plan (pPTP)) to improve medication adherence in young adults with cSLE over 3 months. Method: This is a proof-of-concept randomized controlled study. All participants received SimpleMed+ pillboxes that track adherence. The treatment group received a pPTP, and in month 2, preselected digital reminders for missed doses. Reminders were discontinued after 30 days and adherence data collected. Data analysis was done using t-tests. Results: Twenty-one participants were approached and nineteen consented to participate, yielding a recruitment rate of 86%. Participants were on average 20.5 years, mostly black (58%) and female (84%). Of the nineteen consented, eleven were randomized to control (57%) and eight to treatment (42%) groups respectively. All participants in the treatment group rated the pillbox as easy to use, notably; none reported boredom with the pillbox or reminders. Also, 88% of participants in the treatment group rated the pillbox as helpful, however, only 50% reported the pPTP taught them new information about lupus or made them more interested in their lupus management. Conclusions: This is the first use of an electronic pillbox to track adherence to multiple medications in cSLE. The high rating of the pillbox makes it an acceptable method of measuring adherence. Feasibility and acceptability ratings for the intervention were mixed suggesting a there is a subset of cSLE patients for whom this intervention would be beneficial. Future research should focus on a larger trial.