Chapter 6: Essential Components of a Comprehensive Follow-Up Clinic

I. Why is a comprehensive follow-up clinic for NICU graduates needed?

1. 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.

2. 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.

3. 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

4. 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 ...