OP0372-PARE Beyond the Doctor's Office: The School and Workplace Needs of Young People Living with Rheumatic Disease
Notice bibliographique
Résumé
Background: Young people living with rheumatic diseases face unique physical and psychological challenges that extend beyond their medical care. These challenges impact their participation in school and work, affecting mental health, academic performance, employment opportunities, and social life. Recognizing these issues, the Take a Pain Check Foundation (TAPC) and the Canadian Arthritis Patient Alliance (CAPA), two patient led organizations, initiated the Make Rheum for Youth project. This patient-driven initiative seeks to identify the unmet needs of young people with rheumatic conditions and explore ways to provide meaningful support. Objectives: The objective is to explore the educational and workplace challenges faced by youth and young adults with rheumatic diseases, focusing on identifying barriers and opportunities to improve social and institutional support. Methods: An online survey was conducted between September 2022 and January 2023, targeting young individuals aged 13 to 29 living with various rheumatic conditions. The survey gathered responses from 67 participants across 10 countries, including Canada, the United States, South Africa, Ireland, India, Spain, Australia, Mexico, the Netherlands, and Romania. It covered topics such as social support, mental health, healthcare, education, employment, and medication access and costs. Descriptive statistics were applied to analyze the data, revealing key trends and highlighting areas of concern. Results: Among the participants, the most common diagnoses were Juvenile Idiopathic Arthritis (52%), Rheumatoid Arthritis (25%), and Ankylosing Spondylitis (20%). A majority reported feeling supported by their families in managing their conditions (36% agreed; 33% strongly agreed). However, significant challenges emerged in academic and workplace contexts. While 43% felt supported by their school, 64% reported anxiety about attending school due to their condition, and only 41% had easy access to school accommodations. Workplace concerns were even more pronounced: 69% felt treated differently in school or work due to their condition, and 62% expressed anxiety about finding a job. Of those employed, only 30% reported being aware of workplace accommodations. Conclusion: Education and employment remain critical areas of unmet need for youth and young adults living with rheumatic diseases. Addressing these barriers requires actionable solutions, including the creation of guides to access educational accommodations, training for educators, and the establishment of peer mentoring programs. In the workplace, collaboration with employers, resources on workplace rights, and mentorship initiatives can foster a more inclusive environment. Community support networks, such as support groups and webinars, can strengthen stakeholder collaboration. Policy advocacy efforts are essential to promote inclusivity, secure funding, and reduce stigma through awareness campaigns. Additionally, research and resource development—including longitudinal studies, digital toolkits, and mobile apps—can further address evolving needs. Involving individuals with lived experiences alongside social workers and healthcare professionals will enhance educational and career opportunities, improve social integration, and ultimately lead to a better quality of life for young people with rheumatic diseases. REFERENCES: [1] Trehan N, Proulx L, Dukes I. Voices Unheard: Unmasking the Hidden Challenges of Youth with Rheumatic Diseases [abstract]. Arthritis Rheumatol. 2023; 75 (suppl 9). https://acrabstracts.org/abstract/voices-unheard-unmasking-the-hidden-challenges-of-youth-with-rheumatic-diseases/. Acknowledgements: NIL . Disclosure of Interests: Natasha Trehan In the past, I consulted on one project for Janssen and AbbVie Canada, In the past, TAPC has gotten grants through pharmaceutical companies to create virtual programs for youth with rheumatic diseases, Laurie Proulx We get grants for CAPA through pharmaceutical companies for programming, Isabel Dukes: None declared. © The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.
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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 | 0,001 | 0,003 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,002 | 0,000 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,005 | 0,001 |
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 ».