Responses from Arabic-Speaking Caregivers of Youth with Chronic Conditions to the Health Care Transition Readiness Starx Questionnaire

Background: Successful healthcare transition (HCT) is vital for youths with chronic conditions shifting from pediatric to adult care. A USA cohort revealed a preference among youths for health information from caregivers. Assessments of HCT readiness using the STARx Questionnaire inform customized interventions. However, there is a lack of studies on Arabic-speaking dyads. Our hypothesis explores potential differences in HCT readiness scores among youth with chronic conditions. Methods: The STARx Questionnaire underwent translation/back-translation into Arabic. Ethics approval was obtained from the University of North Carolina at Chapel Hill and Zagazig University, Egypt. We enrolled youths with chronic conditions and their caregivers. Results: We included 107 youth/caregiver dyads, with 60% male youths, averaging 13.3±1.2 years. Diagnoses comprised 24% Kidney disease, 33% thalassemia, and 43% diabetes mellitus. The median medication count was 2 (range 0-4). Total Caregiver STARx scores positively correlated significantly with youth's age (Pearson r=0.31, Figure 1). While total STARx scores significantly correlated between caregivers and youths (Pearson r=0.18, Figure 1), caregivers scored substantially lower (51±5) than youths (54±5, p=1.35E-07, paired t-test). Lower caregiver scores were observed in disease knowledge and self-management domains, with caregivers outperforming youths in provider communication (Table 1). Conclusion: Arabic-speaking caregivers scored lower in HCT readiness (total, disease knowledge, and self-management), while youths scored lower in healthcare communication. Ambiguity exists whether youths overestimate their skills in disease knowledge and self-management. Further investigation of the caregiver-youth gap in provider communication is needed to enhance youths' skills and perceptions.