Need for a comprehensive follow-up clinic

1. 
   

   Many extremely premature infants and critically ill term infants survive to be discharged home with a complex mix of pulmonary, cardiac, gastrointestinal, endocrine, and neurologic problems, all of which may have a major impact on their overall health, growth, and development.

   
   
2. 
   

   Few general pediatricians and family medicine physicians have the training, experience, and availability to optimally care for these medically fragile NICU graduates during their most vulnerable first years of life.

   
   
3. 
   

   With delayed or ineffective care, acute illnesses or complications can quickly develop into severe, even life-threatening problems. Additionally, feeding and nutritional difficulties can lead to failure to thrive in these fragile infants, necessitating rehospitalization and additional medical costs.

Definition of a pediatric medical home

1. 
   

   The American Academy of Pediatrics (AAP) believes that the medical care of infants ideally should be accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective. These characteristics define the pediatric medical home.

   
   
2. 
   

   It should be delivered or directed by well-trained physicians who provide primary care and help manage and facilitate essentially all aspects of pediatric care.

   
   
3. 
   

   The physician should be known to the child and family and should be able to develop a partnership of mutual responsibility and trust with them.

What we ask of primary care providers

When assuming the care after discharge of an extremely medically fragile infant with multiple chronic medical problems, the primary care physician (PCP) has a great challenge.

1. 
   

   In order to provide the continuous, coordinated, and comprehensive care required from a pediatric medical home, the PCP must stay up to date on many aspects of neonatal care including

   
   
   
   
   1. 
      

      Neonatal technologies and therapies utilized in the NICU

      
      
   2. 
      

      Indications for a wide variety of medications including drug doses, toxicities, and laboratory tests, which must be followed to ensure that the drugs are working and remain safe for the child

      
      
   3. 
      

      Special formulas indicated for premature infants and infants with various intestinal and digestive problems as well as special recipes and additives needed for proper growth and nutrition

      
      
   4. 
      

      Indications, operation, and troubleshooting for a variety of different types of medical equipment such as oxygen by nasal cannula, supplemental nasogastric, gastrostomy or jejunal tube feedings, ventriculoperitoneal shunt, ileostomy and colostomy tracheostomy, cardiopulmonary monitor and oximeter, laptop ventilator

   
   
2. 
   

   Providing this comprehensive and complex care also requires increased office visit time and frequency for the primary care provider. Barriers to providing this necessary care include

   
   
   
   
   1. 
      

      Decreased training time for residents in high risk infant convalescent care and discharge planning

      
      
   2. 
      

      Few formal update courses for pediatricians and family medicine physicians in the care of medically fragile infants

      
      
   3. 
      

      Inadequate reimbursement from insurance for the increased time required to provide adequate care to infants with complex medical problems

What we ask of parents

When medically fragile infants are discharged from the NICU with complex medical problems, parents are expected to assume a great deal of responsibility in caring for their infants with very little medical knowledge or training.

1. 
   

   Specifically parents are expected to

   
   
   
   
   1. 
      

      Administer a variety of medications with different dosing schedules and fractional dosing amounts

      
      
   2. 
      

      Mix formulas to increased caloric densities and/or add formula or other additives to breast milk

      
      
   3. 
      

      Follow recommended feeding schedules and strategies to improve feeding effectiveness

      
      
   4. 
      

      Acquire the medical knowledge to operate and troubleshoot a variety of different types of medical equipment being utilized by their child

      
      
   5. 
      

      Learn strategies to deal with an infant with poor state regulation, increased irritability, and abnormal sensitivity to sensory stimulation

   
   
2. 
   

   In addition to caring for their medical fragile infant, parents must also deal with

   
   
   
   
   1. 
      

      Multiple subspecialty appointments

      
      
   2. 
      

      Multiple intervention services in or out of the home

      
      
   3. 
      

      Care for other children

      
      
   4. 
      

      Lost income if caregiver now needs to stop working in order to stay at home with the child

Need for a “transitional medical home”

1. 
   

   Health care providers with special training, experience, availability, and commitment are needed to provide comprehensive follow-up care for these infants and their families while they continue to convalesce after discharge and until they can be taken care of by their community pediatricians or family medicine physicians.

   
   
2. 
   

   Good health, nutrition, growth, and neurodevelopment during the first year of life for these high-risk infants are imperative in order to maximize their long-term medical and developmental outcomes.

   
   
3. 
   

   Several studies have demonstrated that comprehensive follow-up care, including care of acute and chronic illnesses and complications as well as well-baby care, provided by experienced physicians and nurse practitioners substantially reduced life-threatening illnesses, resulting in decreasing death or admission to a pediatric intensive care unit as well as significantly decreasing overall cost of medical care in these infants. Despite these findings, few neonatal intensive care follow-up clinics presently provide comprehensive and coordinated care for their NICU graduates.

   
   
4. 
   

   This problem indicates the need for developing a new more comprehensive medical home model, a transitional medical home , to provide transitional medical care between the hospital and pediatric medical home in order to improve both the short- and long-term medical and developmental outcomes of extremely medically fragile high-risk NICU graduates (Figure 6-1).