Multidisciplinary Care Coordination Training for Children with Medical Complexity: The Arizona Experience Innovative and Promising Practice in Pediatric Medical Home Implementation

Phoenix Children’s Hospital and the Arizona state Maternal and Child Health (MCH) Title V / Children and Youth with Special Health Care Needs (CYSHCN) program collaborated to adapt and implement content from the curriculum to enhance care coordination for children with medical complexity (CMC) and their families seen at Phoenix Children’s Hospital. The adaptation was very successful, and planning is underway to facilitate additional trainings on shared plans of care and family-professional partnerships with care coordination stakeholders who attend the initial training. Read more.

Viewpoint: ‘Family Burden’ and ‘Medical Complexity’: Wrestling with Meaning, Impact of Common Terminology

Our very own Meg Comeau, a long-time CSHCN professional and the Principle Investigator for The Collaborative Improvement and Innovation Network to Advance Care (CoIIN) for Children with Medical Complexities (CMC), suggests that commonly used terms such as “family burden” and “medical complexity” are viewed differently by parents and professionals, with consequent impact on how services are provided. She proposes reconciling those views, with the goal of creating a better system of care. Read more.

Disparities in Inpatient Intensity of End-of-Life Care for Complex Chronic Conditions

Children with medical complexities (CMC) need a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. This article looks at the sociodemographic disparities in the intensity of end-of-life care for CMC and whether or not they are receiving high-quality and goal-concordant care end-of-life care. Read more.

Asking Difficult Questions: Quality of Life and End of Life Conversations by Cara Coleman, Family Voices National

This article by our own Cara Coleman was featured in the 2019 Exception Parent-Physician-Patient-People (EP) Guide: Navigating Special Needs Resources. It includes both a poignant, down-to-earth and refreshingly honest approach to the topic, as well as a host of tangible resources, not just for end of life, but for quality of life for CMC and their families.

Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families

Pediatricians need to be aware of the potential impact of psychosocial factors on the health and well-being of CSHCN and their families, according to a clinical report from the American Academy of Pediatrics recently published in Pediatrics. The report provides guidance for pediatric providers to facilitate and coordinate care and urges pediatric practices to collaborate with behavioral health providers, schools, social services, and other community agencies that are part of their patient’s life.
Dennis Kuo is a member of the CMC CoIIN National Advisory Committee