Transition of Care
Transition of care may be necessary for your patient with cystinosis for various reasons.
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 healthcare 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
Different age groups require special considerations4:
Early Adolescence
Early Adolescence
- Adherence to medications
- Coping with medication side effects
- Educational services or school accommodations
Late Adolescence
Late Adolescence
- Taking responsibility for medications
- Maintaining privacy while taking medications
- Coping with odor and other side effects of cysteamine therapy
Adulthood
Adulthood
- Reproductive health
- Finding adult specialists with cystinosis experience
- Insurance coverage support in postsecondary school
Planning for the Transition to Adult Care
A well-executed transition plan can help patients with cystinosis1,5
- Effectively manage their condition
- Take ownership of their care
- Feel comfortable with new providers
- Overcome challenges
- 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
Key education and self-management skills
Supervised autonomy
- Symptom and side effect knowledge
- Adherence facilitators
- Types of medication
- Help preparing pill box
- Active role in appointments
- Healthy habits/nutrition
Key education and self-management skills
Autonomy with support
- Disease knowledge
- Treatment adherence
- Education/career planning
- Appointment scheduling/attendance alone
- Coping mechanisms
- Healthy lifestyle
Key education and self-management skills
Autonomy ± support
- Responsibility for healthcare
- Treatment adherence
- Education/career planning
- Reproductive and sexual health
- Insurance updates
- Community support
Resources are available for patients/caregivers and providers to improve the transition of cystinosis care.
Continuity of Multidisciplinary 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
Consider the Impacts of
Untreated Cystinosis
Let a representative assist you in the care transition journey
References
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.