Healthcare Transition to Adult-Focused Services with Chronic or End-Stage Kidney Disease

Healthcare transition (HCT) is defined as “the process of moving from a child to adult model of health care with or without a transfer to a new clinician.” HCT involves adolescents/young adults (AYAs), their parents/caregivers, and interdisciplinary providers in both the pediatric- and adult-focused settings. HCT preparation for cognitively able AYAs with chronic conditions may start at age 12 and would ideally continue until the mid-20 s, when self-management skills are mastered. Caregivers of AYAs with cognitive impairment must be supported to develop long-term plans. HCT preparation is a matter of patient safety, justice, and equity, since without it, AYAs with chronic conditions are at greater risk for poor health outcomes and mortality. HCT preparation must be equitable and sensitive to culture, language, and patient/family needs. We have documented that adolescents with chronic conditions prefer to learn about their health condition from their caregivers when possible. Therefore, HCT preparation must focus on both AYAs and parents/caregivers, and progress should be measured at least annually to continually inform the design of appropriate interventions. Instruments to measure HCT readiness and HCT preparation tools targeting both AYAs and parents/caregivers are available and will be discussed in this chapter. We also include patient and parent/caregiver perspectives and recommendations for interdisciplinary collaboration on HCT preparation based on empirical evidence.