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Developing a transition workshop for adolescents with sickle cell disease.

James Bradley1,2, Zelyn Lee1, Melina Cheong1,3

  • 1Hemoglobinopathy Clinic, Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada.

Health Care Transitions
|December 23, 2024
PubMed
Summary

Adolescents and young adults with sickle cell disease (SCD) need better training for transitioning to adult care. A virtual workshop improved their confidence in managing appointments and navigating the adult healthcare system.

Keywords:
Adolescents and Young AdultsEducationHealth Care TransitionQuality ImprovementSelf-Management SkillsSickle Cell Disease

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Area of Science:

  • Health outcomes research
  • Adolescent medicine
  • Quality improvement in healthcare

Background:

  • Transitioning from pediatric to adult care is challenging for adolescents and young adults (AYA) with sickle cell disease (SCD).
  • Key self-management and transition-related skills are often inadequately taught.
  • This gap impacts health outcomes for AYA with SCD.

Purpose of the Study:

  • To identify specific disease self-management skills AYA with SCD felt unprepared for.
  • To design and evaluate an educational program addressing these identified skill gaps.

Main Methods:

  • A quality improvement (QI) study utilized the Plan-Do-Study-Act (PDSA) model.
  • Patient surveys identified priority self-management skills.
  • A virtual workshop was developed and delivered, with feedback collected electronically.

Main Results:

  • 'Navigating the adult health care system' was the top skill deficit identified by AYA (n=39).
  • The virtual workshop was rated excellent by 79% of participants, with 'appointment management' being highly valued.
  • Participants reported increased confidence (71%) and awareness (86%) in navigating adult care.

Conclusions:

  • A virtual workshop effectively addressed transition skill gaps for AYA with SCD.
  • The PDSA framework facilitated the identification of specific educational needs.
  • This approach can enhance patient education within established transition programs.