Browsing by Author "Lalloo, Chitra"

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    Assessing the impact of the iPeer2Peer program for adolescents with juvenile idiopathic arthritis: a mixed-methods randomized controlled trial
    (2024-12-27) Nishat, Fareha; Kelenc, Lauren; Berard, Roberta; Duffy, Ciaran; Feldman, Brian; Forgeron, Paula; Huber, Adam M.; Luca, Nadia; Schmeling, Heinrike; Spiegel, Lynn; Tucker, Lori; Watanabe-Duffy, Karen; Killackey, Tieghan; Lalloo, Chitra; Wiles, Brittany; Nair, Anya; Olaizola, Sofia; McDermott, Brenna; Tavangar, Farideh; Kohut, Sara A.; Stinson, Jennifer N.
    Abstract Background Juvenile Idiopathic Arthritis (JIA) is a chronic pediatric illness, whereby youth experience physical, emotional and psychosocial challenges that result in reduced health related quality of life (HRQL). Peer mentoring has been shown to improve disease self-management in adults with chronic conditions, with mixed results in younger populations. Building on our pilot work – which supported the feasibility and initial effectiveness of the iPeer2Peer program – the objective of this study was to assess the clinical effectiveness of the program in youth with JIA through a waitlist randomized controlled trial. Methods Eighty-one youth (aged 12–18) were randomized to the intervention group and matched with trained peer mentors (18–25 years; successfully managing their JIA), completing of up to ten 30-min video calls over a 15-week period. Eighty-three youth in the control group received standard care. Outcome assessments occurred at enrollment, 15 weeks post randomization and 6-months post randomization. The primary outcome was self-management, measured using the TRANSITION-Q. Secondary outcomes were HRQL, pain, emotional distress, disease knowledge, self-efficacy, and perceived social support. These were assessed using linear mixed effects models. Content analysis of semi-structured interviews and focus groups was used to assess satisfaction with the program with mentors and mentees upon study completion. Results In total, 164 youth (mean age 14.4 ± 1.9 years, 78% female) were randomized to the study. The proposed sample size was not reached due to challenges in recruitment, likely impacted by the COVID-19 pandemic. The iPeer2Peer program did not show significant improvement in self-management (p = 0.7), or any of the secondary outcomes. Three key categories emerged from content analysis: (1) Fulfillment and Support Through Shared Experience, (2) Enhancing Program Delivery and (3) Strategies to Boost Engagement. These findings highlight that mentees valued the ability to converse with mentors who empathized with their disease experience, while mentors found it fulfilling to support mentees, and noted that they could have benefited from this type of support themselves. Conclusion While the iPeer2Peer did not result insignificant changes in clinical outcomes, both mentors and mentees were satisfied with the program and felt that mentorship provided real-world benefits for disease management and overall wellbeing. Trial registration ClinicalTrials.gov, NCT03116763. Registered 31, March 2017, https://www.clinicaltrials.gov/study/NCT03116763
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    ItemOpen Access
    Development and validation of the RACER (Readiness for Adult Care in Rheumatology) transition instrument in youth with juvenile idiopathic arthritis
    (2021-06-05) Spiegel, Lynn; Tucker, Lori; Duffy, Karen W.; Lalloo, Chitra; Hundert, Amos; Bourre-Tessier, Josiane; Hazel, Elizabeth; Luca, Nadia; Mosher, Dianne; Nguyen, Cynthia; Stringer, Elizabeth; Victor, Charles; Stinson, Jennifer
    Abstract Background Current evidence suggests that many adolescents with juvenile idiopathic arthritis (JIA) do not successfully transfer to adult care, which can result in adverse health outcomes. Although a growing number of clinical programs have been designed to support healthcare transition, there is a lack of psychometrically sound instruments to evaluate their impact on development of transition-related knowledge and skills in youth with JIA. The purpose of this study was to develop and validate RACER (Readiness for Adult Care in Rheumatology), a self-administered instrument designed to measure stages of readiness for key transition-related skills in adolescents with JIA. Methods A phased approach was used to develop and evaluate the validity and reliability of RACER. Phase 1 A was a consensus conference with 19 key stakeholders to inform instrument domains and items. Phase 1B determined initial content validity using a sample of 30 adolescents with JIA and 15 clinical and research experts. Finally, Phase 2 was a prospective cohort study with repeated measures to evaluate the internal consistency, test-retest reliability, construct validity and responsiveness of the instrument within a sample of adolescents with JIA. Results In Phase 1 A, initial item generation yielded a total of 242 items across six domains from the consensus conference, which was subsequently reduced to a 32-item instrument. Phase 1B established the content validity of the instrument in adolescents with JIA. In the Phase 2 study, with a sample of 96 adolescents, the RACER instrument exhibited good internal consistency in five of its six subscales (Cronbach’s α > 0.7), and strong test-retest reliability between the first two administrations (ICC = 0.83). It also showed robust convergent validity by highly correlating with measures of self-management (SMSAG, rho = 0.73) and transition (TRANSITION-Q, rho = 0.76). The RACER was not correlated with unrelated measures (discriminant validity; PedsQL, rho = 0.14). The RACER scores increased significantly over time as expected, supporting measure responsiveness. Conclusions The RACER is a reliable and valid instrument which is sensitive to change for assessing transition readiness in adolescents with JIA.