COMPARING CHILDHOOD-ONSET VERSUS ADULT-ONSET SYSTEMIC LUPUS ERYTHEMATOSUS YOUNG ADULTS’ LIVED EMPLOYMENT EXPERIENCES
Notice bibliographique
Résumé
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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Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,002 | 0,003 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,002 | 0,001 |
| Communication savante | 0,002 | 0,001 |
| Science ouverte | 0,000 | 0,003 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».