Treatment Burden, Healthcare Experiences, and Health-Related Quality of Life Among Youth with Chronic Kidney Disease Treated for Hypertension

Abstract

Background: Controlling blood pressure (BP) is essential for slowing chronic kidney disease (CKD) progression. This study examined the associations between treatment burden, assessed by antihypertensive medication use, and health-related quality of life (HRQoL) in youth with CKD and hypertension. Methods: Youth (aged 8 to 21 years) were identified through electronic health records from 15 institutions. Youth and caregivers completed an online questionnaire assessing healthcare experiences, medication use, physical symptoms, and BP monitoring. HRQoL and related well-being domains (fatigue, anxiety, sleep disturbance, global health, and life satisfaction) were assessed using PROMIS® measures. Analyses focused on youth-reported outcomes. Linear regression estimated associations between antihypertensive medication use and HRQoL outcomes, and scores were compared to the general population. Results: The study included 395 youth (Mage = 16.8 years, 54% female) and 238 caregivers. Over 95% of caregivers reported generally positive healthcare experiences. Most youth (92%) reported at least one of the physical symptoms asssessed (median [IQR] = 5 [3, 8] symptoms). Twenty-one percent took no antihypertensive medications, 56% took one, and 23% took multiple. Use of multiple medications was associated with slightly lower global health (B = - 2.6; 95% CI: - 4.9, - 0.3) after adjustment for CKD stage. No associations were observed for other HRQoL domains. Overall, youth reported lower QoL than the general population, with the greatest impairments observed in global health and fatigue. Discussion: Youth with CKD and hypertension reported generally positive healthcare experiences, and antihypertensive medication use, one component of treatment burden, showed minimal association with HRQoL. Despite modest effects, continued attention to HRQoL remains an important aspect of care for youth with CKD and hypertension.