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The CDH patient perspective journey.

Beverley Power1

  • 1Management Committee, CDH UK - The Congenital Diaphragmatic Hernia Charity, King's lynn, United Kingdom.

Frontiers in Pediatrics
|March 10, 2023
PubMed
Summary
This summary is machine-generated.

Congenital Diaphragmatic Hernia (CDH) patient journeys were mapped using patient experiences and data. This created a patient-friendly infographic to improve understanding and support for those affected by CDH.

Keywords:
CDHCongenital Diaphragmatic Herniahealthcareneonataloutcomespatient journeypediatricstransition of care

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Area of Science:

  • Medical research
  • Patient advocacy
  • Healthcare informatics

Background:

  • Congenital Diaphragmatic Hernia (CDH) is a complex congenital malformation with significant mortality and long-term health challenges.
  • Understanding the lifelong impact of CDH on patients is difficult due to the complexity of tracking their health and functional outcomes.
  • CDH UK, a charity with over 25 years of experience, possesses extensive patient knowledge and supports individuals affected by CDH.

Purpose of the Study:

  • To develop a comprehensive patient journey map for Congenital Diaphragmatic Hernia.
  • To identify key timepoints and significant events throughout a patient's experience with CDH.
  • To create a patient-centered resource for understanding the CDH journey.

Main Methods:

  • Analysis of existing data and medical literature.
  • Recruitment of a focus group to capture lived experiences.
  • Utilizing the Team Idea Mapping method to plot patient journey stages and timepoints.
  • Comparison of patient-reported experiences with existing data to identify common issues.

Main Results:

  • A patient-friendly infographic visualizing the CDH patient journey has been developed.
  • The infographic serves as a tool to enhance understanding of the lifelong CDH experience.
  • CDH UK has initiated a mobile application prototype based on this journey map and identified areas for service improvement.

Conclusions:

  • The developed patient journey can serve as a foundation for CDH care and research.
  • It offers potential for improving healthcare standards, benchmarking, and patient transitions.
  • Further exploration of the journey may yield insights into CDH etiology, pathology, and enhance patient support services and mental health outcomes.