The transition to adulthood varies based on each patient’s individual circumstances and needs.1,2
Identifying barriers and changing needs is key to transition planning
Click the sections on the graph to learn more about identifying barriers and changing needs.
Progressive and systemic disease involvement1,6
Treatment fatigue and psychosocial effects1,6
Educational, vocational, and financial challenges1,6
Shift in family dynamics and caregiver role1,6
Changes in cystinosis care team1
Developing self-management skills is an important component of successful transition to greater independence and self-care in adulthood.1,3 Self-management focuses on patient autonomy and the shift in responsibility from the parent or caregiver to the patient, including managing medications and medical appointments, maintaining daily activities, and developing coping mechanisms.1-4
Clinicians should also discuss ways that caregivers can reinforce skill development, such as patients independently scheduling and attending clinic appointments and calling the pharmacy for prescription refills.1-3
