Measuring What Matters to Children With Medical Complexity and Their Families. 2024

Greg Randolph, and Cara Coleman, and Carolyn Allshouse, and Benjamin Plant, and Dennis Z Kuo
Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.

The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) was designed with a foundational commitment to partnership with family leaders to codesign and improve systems of care and supports for CMC and their families - this fundamental commitment was essential to the CMC CoIIN's measurement strategy. In this paper, we examine key learnings from partnering with family leaders from interdisciplinary state teams in the CMC CoIIN to identify and define quantitative quality improvement measures to improve care and support for CMC and their families, including quality of life, well-being, and flourishing; unmet health needs; and support systems such as medical home, patient and family engagement, and shared plans of care. Codesigning the CMC CoIIN measurement strategy with family leaders greatly enhanced our measurement approach and provided numerous unique learning opportunities for the CMC CoIIN's project team and state teams.

UI MeSH Term Description Entries
D007858 Learning Relatively permanent change in behavior that is the result of past experience or practice. The concept includes the acquisition of knowledge. Phenomenography
D011788 Quality of Life A generic concept reflecting concern with the modification and enhancement of life attributes, e.g., physical, political, moral, social environment as well as health and disease. HRQOL,Health-Related Quality Of Life,Life Quality,Health Related Quality Of Life
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D058996 Quality Improvement The attainment or process of attaining a new level of performance or quality. Improvement, Quality,Improvements, Quality,Quality Improvements
D018802 Patient-Centered Care Design of patient care wherein institutional resources and personnel are organized around patients rather than around specialized departments. (From Hospitals 1993 Feb 5;67(3):14) Nursing, Patient-Centered,Patient-Centered Nursing,Patient-Focused Care,Person-Centered Care,Medical Home,Care, Patient-Centered,Care, Patient-Focused,Care, Person-Centered,Cares, Person-Centered,Home, Medical,Homes, Medical,Medical Homes,Nursing, Patient Centered,Patient Centered Care,Patient Centered Nursing,Patient Focused Care,Person Centered Care,Person-Centered Cares

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