Children with medical complexity need effective care models

March 1, 2011

Children who are medically fragile and have the most intensive health care needs demand a focused approach to meet their multiple clinical and family-focused needs.

Children with medical complexity (CMC), those children who are medically fragile and have the most intensive health care needs, demand a focused approach to meet their multiple clinical and family-identified needs. Creating sustainable, evidence-based models of care for CMC is essential to address these needs, say researchers in a report published in Pediatrics.

Regardless of their diagnoses, CMC share similar functional and resource-use consequences, including an elevated need for care coordination, researchers say.

The researchers constructed a definitional framework of CMC that revolves around 4 domains: needs, chronic conditions, functional limitations, and health care use.

One or more severe chronic conditions, potentially lifelong, characterize CMC. These children typically are severely limited functionally and often require technologic assistance, such as a tracheostomy tube or wheelchair.

Health care resource use typically is high among CMC and can involve multiple surgeries, frequent and/or prolonged hospitalization, and multiple subspecialty services.

The optimal care model for CMC needs to be developed. "Despite the relatively small numbers of CMC, the impact of suboptimal care for these children on their health, their family's well-being, and the health care system is substantial," the researchers write.

The medical home model with the primary care physician as the hub has been proposed, but time restrictions, inadequate payment, and lack of decision-making support for primary care providers limit its implementation for CMC. Subspecialty clinics do not seem appropriate as most restrict care to patients who fit a specific diagnosis.

The ideal care model would address each of the aforementioned elements that define CMC, the researchers believe. This would include a family-centered system of care that provides health care services and also empowers the family to help manage the child's medical condition; provides education and support to primary care providers on the unique care requirements for the child; enables access to technology that maximizes the child's functioning; and delivers enhanced care coordination and clearly defines provider roles across different settings. Dedicated care coordinators also could be part of the model.

Finally, the researchers call for improvements in evaluation studies for CMC, with outcomes that reflect the components of the definitional framework of CMC (ie, meeting family-identified needs, reducing condition-specific health complications, addressing functional limitations, and reducing unnecessary health service use).

Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529-538.