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Structured Transition Protocol for Children with Cystinosis

Rupesh Raina1,2, Joseph Wang3,4, Vinod Krishnappa2

  • 1Department of Pediatric Nephrology, Akron Children's Hospital, Akron, OH, United States.

Frontiers in Pediatrics
|September 16, 2017
PubMed

Insights

Transitioning pediatric to adult care for cystinosis patients is crucial. A new protocol, RISE, focuses on medical, social, and educational needs to improve adherence and health outcomes.

Area of Science:

  • Pediatric to adult healthcare transition
  • Chronic disease management
  • Patient adherence and outcomes

Background:

  • Adolescents and young adults with chronic diseases face significant challenges during the transition from pediatric to adult medical care.
  • This transition period, marked by psychosocial development and increased responsibilities, heightens the risk of non-adherence to medical regimens.
  • Non-adherence in cystinosis patients can precipitate severe complications, including graft loss and disease progression.

Purpose of the Study:

  • To introduce a structured transition protocol for cystinosis patients.
  • To provide a guide for patients, families, and healthcare providers involved in the transition process.
  • To enhance the overall well-being of cystinosis patients by addressing medical, social, and educational/vocational aspects.

Main Methods:

  • Development of a structured transition protocol based on four core competencies: Recognition, Insight, Self-reliance, and Establishment of healthy habits (RISE).
  • Focus on integrating medical, social, and educational/vocational support systems.
  • The protocol is designed as a guide, acknowledging it has not yet been formally tested.

Main Results:

  • The protocol aims to mitigate risks associated with the transition period, such as non-adherence.
  • Anticipated improvement in patient outcomes by addressing a holistic range of needs.
  • Identification of potential challenges is ongoing due to the protocol's untested nature.

Conclusions:

  • A structured approach is necessary to support cystinosis patients during their transition to adult care.
  • The RISE protocol offers a framework to improve adherence and manage chronic diseases effectively.
  • Further research and testing are required to validate the protocol's efficacy in real-world settings.

Keywords:
adolescentchronic disease self-managementpediatrictransition caretransition clinic

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