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Without healthcare transition (HCT) preparation from pediatric to adult-centered care, the outcomes of youth with chronic conditions can be unfavorable. In a USA cohort, we have demonstrated that youth prefer to learn about their health condition from their caregivers. Assessments of HCT readiness guide customized interventions based of skill achievements. The youth and caregiver versions of the STARx Questionnaire (as well as other tools) measures HCT readiness, however, studies among Arabic-speaking dyads are elusive. We hypothesized that the HCT readiness scores by youth with chronic conditions would be different.
The clinical version of the 18-item self-administered STARx Questionnaire (max score 90), has been translated into 8 languages and is utilized in 15 countries. After translation/back translation into Arabic and ethics approval from the University of North Carolina at Chapel Hill and Zagazig University hospital in Zagazig, Egypt, dyads of youths with chronic conditions and their caregivers joined our study the summer of 2022.
We enrolled 107 youth/caregiver dyads. Youths’ characteristics were: 64 (60%) males; mean age 13.3±1.2 years (range 10-16) and their diagnoses were 26 (24%) renal failure, 35 (33%) thalassemia, and 46 (43%) diabetes mellitus. The median number of medications was 2 (range 0-4) and DM patients received 21 insulin injections/week. Female caregivers were 93 (87%) and all had attended public school. Total Caregiver STARx Questionnaire scores correlated positively and significantly with the youth’s age (Pearson r=0.31, Figure 1). While caregivers’ and youths’ total STARx Questionnaire scores correlated significantly (Pearson r= 0.18, Figure 1), caregivers’ scores were significantly lower (51±5) than their youths’ scores of 54±5 (p= 1.34772E-07, paired t-test). Lower caregiver score percentages of the maximum possible score in each domain were noted for the domains of disease knowledge, followed by self-management. By contrast, in the domain of provider communication, the caregivers scored the skills better than the youths (Table 1). The percentages of points in each 3 domains were 50±8 versus 75±6% for disease knowledge, 53±8 versus 61±7% for self-management, and 75±8 versus 62±10% for provider communication, respectively.
In this Arabic-speaking cohort, caregivers had lower HCT readiness scores compared to their youth’s based on total, disease knowledge and self-management subdomains of the STARx Questionnaire, whereas the youth scored themselves lower than their caregivers for healthcare communication. It is unclear if the youth overestimate their skills in the disease knowledge and self-management domains. The significant difference between the caregiver and youth assessment in the domain of provider communication requires further studies and needs to aim at improving the skills and perceptions of the youths.