TABLE 1

Health Outcome Domain Descriptions and Selected Health Outcomes

GCM DomainDescription of DomainExample Prompta Response Within Domain (ie, CMC Health Outcome)
1: basic needsCMC having their basic needs met76: having basic needs met, such as housing, food, clothing, and safety
2: inclusive educationAccess to an education system that fully supports CMC and allows the opportunity for maximal participation in school20: an individualized education plan that optimizes learning and development
3: child social integrationThe opportunity for full social immersion and acceptance by a community that empowers CMC15: freedom from bullying, discrimination, abuse, or neglect because of their disability
4: current child health-related quality of lifePhysical, emotional, and social aspects related to the health and developmental status of CMC2: feeling loved and valued
5: long-term child and self-sufficiencyThe presence of confident and self-reliant management of care for CMC29: parents and/or caregivers who understand the condition well and have the skills to manage the child’s health
6: family social integrationAccess to family social supports that allow the family to fully participate in the child’s life and remain active in the community that they live in66: parents who are able to fully participate in their children’s care without fear of losing their jobs or income
7: community system supportsAccess to social and physical supports that allow CMC to navigate their homes and communities23: adequate benefits that cover the children’s needs and provide them the services and supports they need to remain in the community
8: health care system supportsAccess to supports that allow CMC to obtain all needed health care services40: comprehensive and uninterrupted health insurance that covers all equipment, service, or care needs
9: high-quality patient-centered medical homeAccess to and use of high-quality comprehensive and specialty health care11: comprehensive care that includes case management, an education system, medical providers, and the child and family
10: family-centered careThe presence of a beneficial partnership between providers, patients, and families that places families at the center of planning and decision-making related to the child or youth’s health70: the child or youth being included in decision-making regarding his or her medical care whenever appropriate and possible
  • a A healthy life for a child or youth with medical complexity includes: _________.