Background/Purpose: Young adulthood (18-30 years) is a life stage with many transitions. Young adults with Systemic Lupus Erythematosus must navigate this period while living with a devastating illness. Young adults with childhood-onset SLE (cSLE) have more time to adapt compared to adult-onset SLE (aSLE) patients. Thus, lived experiences of young adults with cSLE may differ from their aSLE counterparts. We aimed to compare the lived employment (school and work) experiences of young adults with cSLE and aSLE.

Methods: Participants were recruited from 3 rheumatology clinics in Canada for individual semi-structured, English language qualitative interviews. Participants completed a pre-interview questionnaire (socio-demographics, SLE history and work characteristics). Semi-structured interviews were conducted by video/phone, transcribed verbatim, double-coded and analyzed using thematic analysis. Divergence is defined as differences in articulating experiences under the same theme.

Results: 34 SLE patients: 16 (47%) cSLE, 18 (53%) aSLE, were interviewed. There were 25 females, 7 males, 2 non-binary. Median ages were 21 (cSLE) and 28 years (aSLE). 59% of cSLE and 76% of aSLE participants were working. Major organ involvements were present in 56% (similar in cSLE and aSLE and disease duration). There were 4 main themes and 10 sub-themes. Diverging subthemes are highlighted below:1) Decreased productivity (subthemes: physical tasks and cognitive performance): Both groups endorsed fatigue, cSLE group changed course to reduce fatigue while aSLE group tried to push through. cSLE group avoided flares by planning ahead but aSLE group dealt with flares as they occurred and were forced to change course. Though both groups report brain fog, cSLE group described attention problems but aSLE group memory problems. 2) Interference with employment (subthemes: changing career path, losing/quitting job/ school, and medical encounters): cSLE group planned their career by making different choices before entering the workplace but the aSLE group had to change their work. 3) Social relations (subthemes: interference with social relations, and social support needs): The cSLE group had to learn to prioritize their health over social activities but the aSLE group prioritized their health. 4) Flexibility (subthemes: autonomy in different settings): While both groups desired autonomy, the cSLE group was better able to access it compared to the aSLE group.

Conclusion: While young adults with cSLE and aSLE face similar challenges during employment, they also have different lived experiences. This may also reflect differences in age, life stage, and type of employment (school vs. work) between the 2 groups. Interventions targeting the challenges identified in young adulthood offer an opportunity for change with large potential future effects. Late cSLE teens and early post-diagnosis aSLE patients could be offered interventions to help them gain and sustain productive employment.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/comparing-childhood-onset-versus-adult-onset-systemic-lupus-erythematosus-young-adults-lived-employment-experiences/