COMPARING CHILDHOOD-ONSET VERSUS ADULT-ONSET SYSTEMIC LUPUS ERYTHEMATOSUS YOUNG ADULTS’ LIVED EMPLOYMENT EXPERIENCES
Bibliographic record
Abstract
PV147 / #399 Poster Topic: AS17 - Miscellaneous Background/Purpose Young adulthood (18 to 30 years), is an important life stage with many transitions. Young adults with Systemic Lupus Erythematosus (SLE) must navigate this period while living with a devastating illness, however young adults with childhood-onset SLE (cSLE) have a longer time to adapt to SLE compared to those with adult-onset SLE (aSLE). As such, the 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 semistructured, English language qualitative interviews. Participants completed a preinterview questionnaire (socio-demographics, SLE history and work characteristics). Semistructured interviews were conducted by video/phone, transcribed verbatim, double-coded and analyzed using thematic analysis. Results 34 SLE patients: 47% cSLE and 53% aSLE, were interviewed. Majority were females (27/34, 73.5%), the rest were males or non-binary. Median ages were 21 (cSLE) and 28 years (aSLE). 15 were working, 13 were students, and 6 were unemployed, in between school and work, at the time of the interview. 59% of cSLE and 76% of aSLE participants were working. Major organ involvements were present in 56% (similar in cSLE and aSLE). There were 4 main themes and 10 subthemes, with some divergence between cSLE and aSLE: Decreased productivity (subthemes: physical tasks, cognitive performance): Both groups described decreased productivity. In physical tasks, aSLE participants reported difficulties due to joint pain while the cSLE group attributed fatigue. In cognitive performance, the aSLE group tended to be forgetful, while cSLE patients described concentration difficulties. Interference with employment (subthemes: changing career path, losing/quitting job or school, medical appointments): The subthemes diverged as the cSLE group reported both positive and negative effects of SLE which both guided and hindered their career choices , while the aSLE group adapted their careers to SLE. Medical appointments were deemed disruptive as both groups had to miss entire work/school days. Social relations (subthemes: questions from peers and colleagues, interference with social relations, and social support needs): The aSLE group reported feeling judged by peers and colleagues about their disease after disclosure, while the cSLE group chose not to talk about their illness. Some in the aSLE group reported that SLE did not impact their social relations but most of cSLE felt negative impacts. Those with aSLE actively sought peer advice, while the cSLE group additionally obtained physical accommodations (eg, writing class notes.) Flexibility (subthemes-:remote or hybrid, accommodations): Flexibility was reported as an important factor for positive employment experience in both groups. The cSLE group valued social interactions more than the flexibility of remote work, while aSLE valued the latter. Both groups needed accommodations, to allow flexibility to perform their employment tasks. Conclusions Young adults with aSLE and cSLE face similar challenges during employment but the cSLE patients’ lived experiences were different compared to aSLE patients. This observation may reflect differences in age, life stage, and type of employment (school vs. work) between the 2 groups. Physicians can help advocate for SLE young adults to have flexibility in their school/work tasks. Late cSLE teens and early post-diagnosis aSLE patients could be offered personalized counseling, considering their ages/life stage, taught skills to disclose and obtain accommodations, to help them be successful in their academic and employment trajectories.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.000 | 0.003 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".