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Measuring What Matters to Children With Medical Complexity and Their Families.

Greg Randolph1, Cara Coleman2, Carolyn Allshouse3

  • 1Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.

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Summary

Partnering with family leaders to codesign quality improvement measures for children with medical complexity (CMC) enhanced care systems. This collaboration improved measurement strategies for CMC care, focusing on well-being and support.

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Area of Science:

  • Health Services Research
  • Pediatric Healthcare Quality Improvement
  • Patient and Family Centered Care

Background:

  • Children with Medical Complexity (CMC) require coordinated, high-quality care systems.
  • Effective quality improvement (QI) strategies necessitate the inclusion of patient and family perspectives.
  • The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) prioritized family leadership.

Purpose of the Study:

  • To examine key learnings from partnering with family leaders to codesign quantitative QI measures for CMC.
  • To identify and define measures related to CMC quality of life, well-being, unmet health needs, and support systems.
  • To understand how family-leader engagement impacts the development of measurement strategies.

Main Methods:

  • Qualitative examination of learnings from interdisciplinary state teams within the CMC CoIIN.
  • Collaborative identification and definition of quantitative QI measures with family leaders.
  • Focus on domains including quality of life, well-being, unmet needs, medical home, patient and family engagement, and shared care plans.

Main Results:

  • Partnership with family leaders was essential to the CMC CoIIN's measurement strategy.
  • Codesigning measures with family leaders significantly enhanced the measurement approach.
  • Unique learning opportunities were generated for project and state teams through this collaboration.

Conclusions:

  • Integrating family leaders in QI measure development is crucial for improving care for CMC.
  • Codesign approaches lead to more robust and relevant measurement strategies.
  • Family-centered measurement enhances the overall effectiveness of care improvement initiatives for children with medical complexity.