OP0372-PARE Beyond the Doctor's Office: The School and Workplace Needs of Young People Living with Rheumatic Disease
Bibliographic record
Abstract
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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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 | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.002 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.005 | 0.001 |
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".