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Patient Independence

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

Patient independence graphic systemic treatment challenges care support

Click the sections on the graph to learn more about identifying barriers and changing needs.

Progressive and systemic disease involvement1,6

  • Impairment and disability
  • Limited understanding of long-term disease impact
  • Complex renal and extrarenal care

Treatment fatigue and psychosocial effects1,6

  • Risk of nonadherence and disengagement from care
  • Mental health/neurocognitive challenges
  • Social stigma and feelings of being misunderstood/different

Educational, vocational, and financial challenges1,6

  • Varied government assistance and resources/support
  • Ability to access medications

Shift in family dynamics and caregiver role1,6

  • Limited early opportunities to develop self-reliance
  • Conflicting desires for autonomy vs continued dependence

Changes in cystinosis care team1

  • Dependence on pediatric care team
  • Mistrust toward new adult care team
  • Resistance to transition process
  • Difficulty finding adult-focused clinicians

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 can foster self-management by1,5

  • Assessing current skills
  • Determining modifiable environmental factors
  • Collaborating on self-management goals
  • Promoting competence and autonomy
  • Engaging the full care team
  • Leveraging community resources

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

  • References

    1. 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. 2. 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. 3. Raina R, Wang J, Krishnappa V. Structured transition protocol for children with cystinosis. Front Pediatr. 2017;5:191. 4. 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. 5. Grady PA, Gough LL. Self-management: a comprehensive approach to management of chronic conditions. Am J Public Health. 2014;104(8):e25-e31. 6. Beinart N, Hackett RA, Graham CD, Weinman J, Ostermann M. Mood and illness experiences of adults with cystinosis. Ren Fail. 2015;37(5):835-839.