TABLE 2

Top 10 Outcomes Rated as Most Important and Their Measurability Ratings

Importance RatingaMeasurability RatingbHealth Outcome
“A Healthy Life for a Child or Youth With Medical Complexity Includes: _________.”
5.694.2976: having basic needs met, such as housing, food, clothing, and safety (domain 1)
5.682.942: feeling loved and valued (domain 4)
5.644.6540: comprehensive and uninterrupted health insurance that covers all equipment, service, or care needs (domain 8)
5.423.8829: parents and/or caregivers who understand the condition well and have the skills to manage the child’s health (domain 5)
5.414.1223: adequate benefits that cover the children’s needs and provide them the services and supports they need to remain in the community (domain 7)
5.374.369: access to necessary and high-quality specialty medical care (domain 8)
5.273.7311: comprehensive care that includes case management, an education system, medical providers, and the child and family (domain 9)
5.253.3966: parents who are able to fully participate in their children’s care without fear of losing their jobs or income (domain 6)
5.253.6670: the child or youth being included in decision-making regarding his or her medical care whenever appropriate and possible (domain 10)
5.22328: hope (domain 4)
  • a On a scale from 1 to 6, please rate how relatively important you think each outcome is to the overall health of CMC and their families: (1) relatively unimportant, (2) slightly important, (3) somewhat important, (4) important, (5) very important, and (6) extremely important.

  • b On a scale from 1 to 6, please rate how measurable each of the following ideas is (by measurable, we mean that you can envision this outcome being widely measured across a health system serving CMC within the next 10 y): (1) very difficult to measure, (2) difficult to measure, (3) somewhat difficult to measure, (4) somewhat easy to measure, (5) easy to measure, and (6) very easy to measure.