The transition from pediatric to adult care for youth with childhood‐onset systemic lupus erythematosus (cSLE) is a vulnerable period. During this transition, adverse outcomes include gaps in care, unscheduled health care utilization, loss of insurance, and high disease activity. This study’s objective was to examine the clinical care teams’ perspective on the psychosocial factors associated with transition outcomes, which are poorly understood in this population.
In‐depth interviews were conducted with clinical care team members who interact with childhood‐onset SLE patients during the transfer from pediatric to adult rheumatology. A semistructured interview guide was used to prompt participants’ perspectives about the psychosocial factors associated with the transition process for patients with childhood‐onset SLE. Audio recordings were transcribed and analyzed using the constant comparative method. Thirteen in‐depth interviews were conducted. Several themes were deemed by clinical care teams as necessary during the transition, including the family’s impact, patient resilience and coping mechanisms, the role of mental health and emotional support, and the need for education, peer support, and social connectedness.
In conclusion, several psychosocial themes were identified that impact patients’ transition with childhood‐onset SLE into adult care. The role of parental modeling, youth resilience, mental health, emotional care, improved childhood‐onset SLE education, and structured peer support and social connectedness are highlighted, which may be amenable to interventions.