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Patient and Family Experience in a Multidisciplinary Clinic for Children With Single-Ventricle Heart Disease

Kelly R Wolfe1, Sarah L Kelly2, Deborah R Liptzin3

  • 1Neuroscience Institute, Section of Pediatric Neurology, Department of Pediatrics, University of Colorado School of Medicine, Children's Hospital Colorado, Aurora, CO, USA.

Journal of Patient Experience
|January 18, 2021
PubMed

Insights

Families found the single-ventricle multidisciplinary clinic (SVMDC) beneficial for children with single-ventricle heart disease (SVHD). The SVMDC demonstrated overall acceptability and perceived value, though financial and social connection aspects require consideration.

Area of Science:

  • Pediatric Cardiology
  • Multidisciplinary Healthcare
  • Patient Experience

Background:

  • Children with single-ventricle heart disease (SVHD) face significant risks for multi-organ morbidity.
  • A single-ventricle multidisciplinary clinic (SVMDC) aims to coordinate specialized pediatric subspecialties for comprehensive care.
  • The patient and family experience within SVMDCs for SVHD is not well understood.

Purpose of the Study:

  • To explore the patient and family experience of care within a single-ventricle multidisciplinary clinic (SVMDC).
  • To assess the acceptability and perceived benefits of SVMDC for children with SVHD.
  • To identify key themes and challenges related to multidisciplinary care for SVHD from the family perspective.

Main Methods:

  • A 26-question survey was emailed to families after their SVMDC visit.
  • The survey included evaluations from cardiology, pulmonology, gastroenterology, neuropsychology, and pediatric psychology subspecialists.
  • Data were collected quantitatively and qualitatively over three years, with anonymized responses.

Main Results:

  • 22% of families completed the survey over three years.
  • 100% of respondents recommended the SVMDC, indicating positive overall experiences.
  • Qualitative themes included logistics, the benefits of multidisciplinary care, key clinic takeaways, and family-to-family connections.

Conclusions:

  • Single-ventricle multidisciplinary clinics (SVMDCs) are acceptable and perceived as beneficial for families of children with SVHD.
  • SVMDCs offer synergistic advantages through coordinated subspecialty care.
  • Further attention to financial considerations and fostering parent connections within SVMDCs is recommended.

Keywords:
Fontanfamily experience surveyhypoplastic left heart syndromemultidisciplinary clinicsingle ventricle

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