Families of children with medical complexity (CMC) experience stressors that affect their quality of life, from managing their child’s intensive health needs round-the-clock to navigating a complex network of providers, payers and community resources. They can feel uncertain, fearful and overwhelmed. Fifty-four percent of families had a family member stop working to care for the child*. Little has been known about how comprehensive care management impacts family health-related quality of life.
The CARE Award assessed the effect of improved care management on measures of parent and family quality of life. Results show that family lives are positively impacted by care coordination through convenient and personalized access to the child’s health care team, enhanced goal setting and care planning that improves the family’s sense of well-being, and improved family-provider partnerships and child outcomes.
*Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A National Profile of Caregiver Challenges of More-Complex Children with Special Health Care Needs. Archives of pediatrics & adolescent medicine. 2011;165(11):1020-1026. doi:10.1001/archpediatrics. 2011.172.