Physician Tools

Transition of Care

Transition of care may be necessary for your patient with cystinosis for various reasons.

Transition to New Cystinosis Providers
Transition to new cystinosis providers icon

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

Transition From Pediatric to Adult Cystinosis Care
Transition from pediatric to adult cystinosis icon

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 adolescent cystinosis patient graphic

Early Adolescence

Early Adolescence

  • Adherence to medications
  • Coping with medication side effects
  • Educational services or school accommodations

Late adolescent cystinosis patient graphic

Late Adolescence

Late Adolescence

  • Taking responsibility for medications
  • Maintaining privacy while taking medications
  • Coping with odor and other side effects of cysteamine therapy

Cystinosis in adult patients graphic

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

Pediatric-focused care
Structured transitional planning infographic highlighting key education and self-management skills for pediatric cystinosis focused care Structured transitional planning infographic highlighting key education and self-management skills for pediatric cystinosis focused care Structured transitional planning infographic highlighting key education and self-management skills for pediatric cystinosis focused care

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
Adolescent-focused care
Structured transitional planning infographic highlighting key education and self-management skills for adolescent cystinosis focused care Structured transitional planning infographic highlighting key education and self-management skills for adolescent cystinosis focused care Structured transitional planning infographic highlighting key education and self-management skills for adolescent cystinosis focused care

Key education and self-management skills

Autonomy with support

  • Disease knowledge
  • Treatment adherence
  • Education/career planning
  • Appointment scheduling/attendance alone
  • Coping mechanisms
  • Healthy lifestyle
Young adult-focused care
Structured transitional planning infographic highlighting key education and self-management skills for adult cystinosis focused care Structured transitional planning infographic highlighting key education and self-management skills for adult cystinosis focused care Structured transitional planning infographic highlighting key education and self-management skills for adult cystinosis focused care

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

Graphic highlighting some of the disciplines involved in the management of renal and extrarenal manifestations of cystinosis Graphic highlighting some of the disciplines involved in the management of renal and extrarenal manifestations of cystinosis Graphic highlighting some of the disciplines involved in the management of renal and extrarenal manifestations of cystinosis

Consider the Impacts of
Untreated Cystinosis

Learn About Promoting
Treatment Adherence

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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.