Healthcare and research priorities of adolescents and young adults with systemic lupus erythematosus: a mixed-methods study

Abstract

Objectives: Managing juvenile-onset systemic lupus erythematosus (SLE) is particularly challenging. The disease may be severe, adolescent patients have complex medical and psychosocial 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 young patients 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 26 years, from five centers in Australia. For each of the five allocation exercises, participants allocated ten votes to 1) research topics; research questions on 2) medical management, 3) prevention and diagnosis, 4) lifestyle and psychosocial; and 5) healthcare specialties, and discussed the reasons for their choices. Descriptive statistics were calculated for votes and qualitative data were analyzed thematically. Results: The 26 participants prioritized research that alleviated the psychological burden of SLE. They allocated their votes towards medical and mental health specialties in the management of SLE, whilst fewer votes were given to physiotherapy/occupational therapy and dietetics. 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. Conclusions: Young patients with SLE value comprehensive care with greater coordination among specialties. They prioritized research focused on alleviating poor psychological outcomes. The healthcare and research agenda for patients with SLE should involve all stakeholders, to ensure they align with patient priorities, needs, and values.