RESUMEN
OBJECTIVES: Childhood-onset systemic lupus erythematosus (cSLE), representing 15%-20% of individuals with SLE, has been difficult to study globally due to differences between registries. This initiative, supported by Childhood Arthritis Rheumatology Research Alliance (CARRA) and Paediatric Rheumatology European Society (PReS), aims to create Core and Expanded cSLE Datasets to standardise and enhance research worldwide. METHODS: 21 international cSLE experts and 4 patients participated in a Delphi process (questionnaires, 2 topic-specific focus groups and 3 virtual consensus meetings) to create 2 standardised cSLE datasets. The Core cSLE Dataset was designed to include data essential to meaningful clinical research across many settings. The Expanded cSLE Dataset was designed for centres able to consistently collect data to address broader research questions. Final data items for the Core and Expanded datasets were determined by consensus defined as >80% agreement) using an adapted nominal group technique and voting. RESULTS: The resulting Core cSLE Dataset contains 46 items, including demographics, clinical features, laboratory results, medications and significant adverse events. The Expanded cSLE Dataset adds 26 additional items and includes patient-reported outcomes. Consensus was also achieved regarding the frequency and time points for data collection: baseline, quarterly follow-up visits, annually and flare visits. CONCLUSION: Standardised Core and Expanded cSLE Datasets for registry-based international cSLE research were defined through the consensus of global experts and patient/caregiver representatives, endorsed by CARRA and PReS. These datasets incorporate disease-specific and patient-specific features, optimised for diverse settings to facilitate international collaborative research for children and adolescents with SLE worldwide.
RESUMEN
Background: Narrative medicine allows patients to reconstruct medical experiences through written portrayals of perspectives, building a mutual depiction of illness while creating a sense of belonging. This modality has not been previously studied in youth with rheumatologic illnesses, a population with high mental health burden and worse health-related quality of life. We aimed to assess the feasibility of a storytelling intervention in this patient population. Methods: This is a mixed-methods study of 14−21-year-olds with rheumatologic diseases followed in the Bronx, NY. Participants completed an hour-long creative writing session focused on patient experience with chronic disease. Pre- and post-questionnaires assessed patient-reported outcomes, and post-participation video interviews assessed personal experiences through the storytelling session. Results: Thirteen female patients were divided amongst four creative writing sessions. Twelve patients completed pre-study questionnaires and 10 completed post-study questionnaires, with 100% completion of the post-participation interviews. PedsQL surveys showed statistically significant improvement in physical health (p < 0.02), and there was no significant difference between pre- and post-scores for any other questionnaires. Interview thematic domains included writing motivation, prior writing experience, illness experience, relating to others, relationship with providers, and support. Conclusion: Creative writing is a feasible and acceptable intervention for youth with rheumatologic illnesses.
RESUMEN
Health and health care disparities in pediatric rheumatology are prevalent among socially disadvantaged and marginalized populations based on race/ethnicity, socioeconomic position, and geographic region. These groups are more likely to experience greater disease severity, morbidity, mortality, decreased quality of life, and poor mental health outcomes, which are in part due to persistent structural and institutional barriers, including decreased access to quality health care. Most of the research on health and health care disparities in pediatric rheumatology focuses on juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus; there are significant gaps in the literature assessing disparities associated with other pediatric rheumatic diseases. Understanding the underlying causes of health care disparities will ultimately inform the development and implementation of innovative policies and interventions on a federal, local, and individual level.
