Transitioning to new providers can be challenging for patients with cystinosis at any age due to the established relationship with their current care team, difficulty finding experienced providers, and unfamiliarity with the new care team. The transition process should be initiated by treating providers with patient input as soon as the anticipated need is identified, such as shifting to adult care, relocation, clinician retirement, insurance changes, or other factors.1-3
The transition process from pediatric to adult care typically begins in early adolescence and aims to ensure continuity of care, address changing health care needs, and support patients’ independence and self-management in adulthood.1,2
The pediatric nephrology/transplant team is often the main care coordinator among multidisciplinary specialists before and during the transition, with responsibilities gradually shifting to adult nephrology/transplant and primary care teams.1,3
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
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
1. Raina R, Wang J, Krishnappa V. Structured transition protocol for children with cystinosis. Front Pediatr. 2017;5:191. 2. Ariceta G, Camacho JA, Fernández-Obispo M, et al. A coordinated transition model for patients with cystinosis: from pediatrics to adult care. Nefrología. 2016;36(6):616-630. 3. Levtchenko E, Servais A, Hulton SA, et al. Expert guidance on the multidisciplinary management of cystinosis in adolescent and adult patients. Clin Kidney J. 2022;15(9):1675-1684. 4. Cystinosis Research Network. Transition Guide for Teens and Young Adults With Cystinosis and Their Families. Accessed October 2021. https://cystinosis.org/wp-content/uploads/2019/01/FINAL_CRN_Transition_TeensAdults-3.pdf 5. Fernandez HE, Foster BJ. Long-term care of the pediatric kidney transplant recipient. Clin J Am Soc Nephrol. 2022;17(2):296-304. 6. Bell LE. The transition of a pediatric kidney transplant recipient from childhood to adult care. Clin J Am Soc Nephrol. 2022;17(5):736-738.
