Session Type: ACR Poster Session B
Session Time: 9:00AM-11:00AM
Background/Purpose: The care of adolescents and young adults with systemic lupus erythematosus (SLE) is particularly challenging. The disease may be severe, adolescent patients have complex medical and psycho-social needs, and they must navigate the transition to adult services. To inform patient-centered care we aimed to identify the healthcare and research priorities of adolescents and young adults with SLE and describe the reasons underpinning their priorities.
Methods: Face-to-face, semi-structured interviews and focus groups were conducted with patients with SLE, aged from 14 to 30 years, from five centers in Australia. In five allocation exercises, participants allocated ten tokens (i.e. votes) to 1) research topics (medical management, prevention and diagnosis, lifestyle and psychosocial), 2-4) research questions associated with research topics, and 5) healthcare specialties, and discussed the reasons for their choices. Descriptive statistics were calculated for votes and qualitative data was analyzed thematically.
Results: From the 26 participants, there was an undifferentiated allocation of votes to research topics and associated research questions. They allocated their votes towards medical and mental health specialties in the management of SLE, whilst fewer votes were given to allied health. Seven themes underpinned participants’ priorities: improving service shortfalls, strengthening well-being, ensuring cost efficiency, minimizing family/community burden, severity of comorbidity or complications, reducing lifestyle disruption, and fulfilling future goals.
Conclusion: Young patients with SLE value comprehensive care, in particular, rheumatology, nephrology and mental health. Research on improving psychological health and self-management of symptoms may improve treatment satisfaction and health outcomes for adolescents and young adults with SLE.
To cite this abstract in AMA style:Tunnicliffe D, Singh-Grewal D, Craig J, Howell M, Tugwell P, Mackie F, Lin MW, O'Neill S, Ralph A, Tong A. Healthcare and Research Priorities of Adolescents and Young Adults with Systemic Lupus Erythematosus: A Mixed-Methods Study [abstract]. Arthritis Rheumatol. 2016; 68 (suppl 10). https://acrabstracts.org/abstract/healthcare-and-research-priorities-of-adolescents-and-young-adults-with-systemic-lupus-erythematosus-a-mixed-methods-study/. Accessed January 20, 2020.
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