A well-executed transition plan can help patients with cystinosis1,5
1
Effectively manage their condition
2
Take ownership of their care
3
Feel comfortable with new providers
4
Overcome challenges
5
Lead fulfilling adult lives
Although the transition to adult care commonly occurs between 18 and 21 years of age, transition planning ideally begins several years earlier to allow for adequate preparation of patients and caregivers as well as identification and integration of new providers. The transition cadence should be individualized to the patient’s goals and ability to manage care independently.1,2,5,6
A structured transition protocol can encourage greater patient independence and care involvement.1,5,6
Pediatric-focused care
Adolescent-focused care
Young adult-focused care
Key education and self-management skills
Supervised autonomy
Key education and self-management skills
Autonomy with support
Key education and self-management skills
Autonomy ± support
Resources are available for patients/caregivers and providers to improve the transition of cystinosis care.
The complex multisystemic nature of cystinosis requires diligent and proactive communication among multidisciplinary team members during all transition stages. This allows for exchanging information, clarifying treatment plans, and addressing ongoing concerns.1-3
Continuity of multidisciplinary care is important for the long-term management of renal and extrarenal manifestations in adulthood.1-3
Specialties involved during and after
transition may include1,3,5
