Background Young adulthood, 18–30 years, is a time when many individuals start working. Failing to establish employment during young adulthood could predict lifetime financial hardships. Lack or limited employment could limit access to healthcare benefits, adversely affecting treatment access and health outcomes.

Aims To determine the average employment trajectory of childhood- and adult-onset systemic lupus erythematosus patients in young adulthood (YASLE).

Methods Patients (with ≥ 2 visits) were from two longitudinal cohorts: the Canadian national lupus cohort (via the Canadian Network for Improved Outcomes in SLE, CaNIOS) and the University of Toronto (UT) lupus cohort from Toronto Western Hospital. The CaNIOS cohort (2002–2020) included participants from multiple provinces, the UT cohort only Ontario patients (1983–2020). Participants report employment states annually. The employment states were: employed, unemployed, homemaker, student, work disabled. This was reduced to: employed, unemployed or not in labour force (NLF, student, homemaker, work disabled) for modelling. The Markov multistate model (msm) was used to model employment trajectory. Transition probabilities at 1, 6, 12 years from age 18 years were calculated.

Results 841 participants (85.4% females): 253 (CaNIOS) and 588 (UT). Mean age (standard deviation, SD) at baseline (cohort entry) was 23.1 (SD 3.7) years. Participants’ age: 38.2% (18- 20 years), 19.3% (21–23 years), 21.9% (24–26 years), 20.7% (27–30 years). 403 (47.9%) were cSLE. 89.5% completed high school. Median disease duration was 3.3 (0.7–6.6, 25^th-75^th percentile, P) years. Median follow-up was 2.8 (0.9- 6.5, 25^th-75^th P) years. At baseline, 16.6% were employed, 5.6% were unemployed and 77.8% were NLF (42 work disabled, 226 homemakers, 386 students). 374/6615 (6%) visits showed state changes. 58% occurred in the NLF group. YASLE patients have the highest probabilities of remaining in the same employment state as baseline (table 1). With increasing age, there was a reduced rate of staying employed (0.69 to 0.64). Those unemployed showed low probability to become employed (0.28 to 0.38). The NLF group has static rate of transition to employment (0.65), without expected increase with age.

Conclusions YASLE patients showed minimal or no increase in transitions into employment from non-employed states, and no increase in employment with age as expected in the general young adult population. This could suggest a lowered labour force attachment in YASLE patients, suggesting difficulties in establishing employment during young adulthood. Future work should focus on YASLE patients’ perceived barriers and facilitators for employment, to target interventions for supporting patients’ employment.