Medical Home and Complex Care Management

The Medical Home

The medical home is an approach to providing holistic, patient-centered primary care and is considered the standard of care for pediatrics. A medical home is particularly important for children with complex and chronic conditions. Medical homes can be accredited by meeting qualifications from such organizations as NCQA (National Committee for Quality Assurance) and AHRQ (Agency for Healthcare Research and Quality).

The following table explains five key features of the medical home model: patient-centered, comprehensive, coordinated, accessible, and committed to quality and safety.

(Source: Why the Medical Home Works. Patient-Centered Primary Care Collaborative, 2013.)

From Medical Home to Medical Neighborhood

Although the medical home model is the gold standard for pediatric care, even a well-resourced medical home cannot provide everything that a patient and their family need for optimal health. The medical neighborhood is a move to integrate primary care, specialty care, and community resources. Children who have needs that extend beyond primary care often experience care that is not well integrated. Poorly integrated care can lead to duplicate testing and treatment, mixed messages from multiple providers, and lack of clarity about overall treatment plans. The goal of the medical neighborhood is to facilitate the flow of information among practitioners from primary care, medical specialties, behavioral health, rehabilitative services, and urgent care. In this way, patients can experience integrated, goal-oriented care. The medical neighborhood may also extend to nonclinical or community settings such as early intervention, school guidance counselors, faith-based organizations, and other community organizations.

Medical Home and Complex Care

Children with special health care needs: The federal Maternal and Child Health Bureau defines children with special health care needs (CSHCN) as children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.

Conditions experienced by CSHCN include developmental delays, attention deficit-hyperactivity disorder, learning disabilities, asthma, depression, anxiety, speech problems, and cerebral palsy. Nearly 20% of children (14.6 million children in the United States) have special health care needs. CSHCN are less likely than children without special health care needs to get needed referrals, to receive effective care coordination, and to have adequate insurance.

Children with medical complexity: Children with medical complexity (CMC) represent about 1% of the pediatric population. These children are the most medically fragile and have the most-intensive health care needs. One framework for conceptualizing the CMC population uses the domains of substantial needs, chronic conditions, functional limitations, and high health care use.

CMC often see multiple specialists, require more-frequent acute care and hospitalizations, and depend on technology (e.g., gastrostomy tubes, tracheostomies, ventilators, pumps, and shunts). Families of children with medical complexity face a costly, time-intensive, high burden of care. All children deserve a comprehensive medical home, but CMC absolutely need one.

Care planning: Care plans can take many forms based on the needs of the individual child. Common single-diagnosis care plans include action plans for asthma, seizures, allergies, metabolic syndromes, and sick days for children with diabetes. More-comprehensive care plans often include some of the following features:

• medical summaries of key history, ongoing medical problems, and follow-up plans

• medications and feeding regimens

• allergies

• a list of key care providers, contact information, and whom to contact when

• action steps for anticipated complications (e.g., seizures, dehydration in the setting of an acute illness, or increased respiratory support during a viral illness)

Families and key providers should work together to create a care plan with a care manager or primary care provider. Families should have a copy of their care plan that is well-documented and regularly updated to share with school, home care providers, and emergency providers and in the medical home chart.

Care plans for children with complex medical needs should also include advanced care plans (i.e., code and resuscitation plans) and broader goals of care that are pertinent to a particular patient’s quality of life and general well-being (e.g., spending more days at school, having fewer hospitalizations, and improving comfort with activities of daily living). Having goals-of-care conversations and sharing the outcome with the entire care team helps align care with the family’s wishes and promote integrated decisions. See Provider Resources for more information on care plans.

(Source: Making Care Coordination a Critical Component of the Pediatric Health System: A Multidisciplinary Framework. The Commonwealth Fund 2009.)