Background: Adolescents diagnosed with rheumatic conditions report impaired health-related quality of life (HRQOL), often despite good disease control [1]. Contributors to the reported poor HRQOL include depression, fatigue, pain, and increased BMI [2]. However, less is known about how weight status directly impacts HRQOL within this population. Additionally, in the US, non-English speakers are often excluded from clinical research, leading to lower minority representation and limited generalizability of research results [3]. Consequently, there is a critical need for the intentional inclusion of individuals from minoritized groups with rheumatic conditions.

Objectives: The main goal of this cross-sectional pilot study is to describe the impact of weight on HRQOL in adolescents with rheumatic conditions. Secondary objectives include: (i) determine whether reported weight-related quality of life differs between caregivers and their adolescents, (ii) observe whether mean scores differ across BMI groups, and (iii) identify trends across Spanish and English-speaking caregiver groups.

Methods: Adolescents aged 11-19 diagnosed with a rheumatic condition (including Lupus, JIA, Vasculitis, etc.) and their caregivers were eligible to participate. Target sample size was 50 dyads (N=100): 25 dyads of a Spanish-speaking (SS) caregiver and their adolescent (n=50) and 25 dyads of an English-speaking (ES) caregiver and their adolescent (n=50). Participants were recruited at a southeastern United States pediatric rheumatology clinic, with adolescents and parents completing the IWQOL©-Kids scale (a measure of the impact of weight on HRQOL) and a modified version of the Importance Confidence Readiness scale (a measure of the importance of addressing weight on a scale of “Not at All” to “Very”). Demographic and anthropometric data were extracted from the electronic health record. IWQOL© scores were transformed to a 0-100 scale with higher scores indicating less impairment. Descriptive statistics were used to summarize the data.

Results: Data collection and analysis is ongoing. Preliminary analyses show 21/50 dyads enrolled (4 Spanish-speaking caregiver dyads: n=8; 17 English-speaking caregiver dyads: n=34). Table 1 summarizes preliminary cohort demographic and anthropometric characteristics. 57% of adolescents were female, 38% male, and 5% transgender. 86% of caregivers were female. Average adolescent age across both cohorts was 15.19 years (SD = 1.89). Preliminary Importance Confidence Readiness Scale results report that 32% of adolescents considered it “Very” important to address their weight, compared to 16% of caregivers. Table 2 summarizes IWQOL© transformed scores in both cohorts. Upon further data collection, a third table will summarize mean scores by adolescent BMI categories.

Conclusion: In this preliminary description of weight-related HRQOL in adolescents with rheumatic conditions, our limited observations are that adolescents in both cohorts reported lower weight-related quality of life than their caregivers in Total QOL, Body Esteem, Social Life, and Family Relations. Body Esteem mean scores were the lowest across all groups, and Family Relations mean scores were consistently the highest. More adolescents reported their weight as “Very” important to address compared to their caregivers. Additional data collection and analysis will further describe trends across participants, including analysis of differences in reported scores across BMI groups, and future work should include implementation of this study within a larger sample size. Understanding how weight status influences HRQOL in the context of adolescent rheumatic conditions is critical in assessing the need for, and development of, interventions to mitigate damaging effects. Additionally, identifying the impact of psychosocial factors across a diverse group of participants can inform the design of culturally sensitive educational programs within this population.

REFERENCES: [1] Kallio M, Tornivuori A, Miettinen PJ, Kolho K-L, Relas H, Culnane E, Loftus H, Sawyer SM, Kosola S. 2024. Health-related quality of life and self-reported health status in adolescents with chronic health conditions before transfer of care to adult health care: an international cohort study. BMC Pediatr. 24:163. https://doi.org/10.1186/s12887-024-04629-x .

[2] Moorthy LN, Peterson MGE, Harrison MJ, Onel KB, Lehman TJA. 2007. Quality of life in children with systemic lupus erythematosus: a review. Lupus. 16(8):663–669. https://doi.org/10.1177/0961203307077539 .

[3] Anwar A, Dawson-Hahn E, Lion KC, Jimenez ME, Yun K. 2023. Exclusion of Families Who Speak Languages Other than English from Federally Funded Pediatric Trials. The Journal of Pediatrics. 262:113597. https://doi.org/10.1016/j.jpeds.2023.113597 .

Acknowledgements: This research was supported in part by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the NIH under Award Number R25HD111367, (Gwathmey, South, MPI: The Wake Forest School of Medicine Training in Research Affecting Child-Health (TRAC) Program). The project described was supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UM1TR004929 to the last author. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Disclosure of Interests: 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.