Chapter 3: Care of NICU Graduates: Role of the Primary Care Provider

I. Primary Care Provider and the NICU Graduate

The primary care provider (PCP) has a unique role to play in the care of medically complex infants who have been discharged from the Neonatal Intensive Care Unit. These children are often followed by many subspecialists, as well as therapists, and receive a multitude of services depending on their individual special needs. The PCP has the unique opportunity to consolidate care, helping reduce subspecialty and emergency department visits, and serve as a “point” provider, minimizing confusion and communication errors between providers and families. This, in turn, may help families better understand the “big picture” of their child's condition.

The importance of this role is highlighted by the AAP guidelines, published in 1996, to help the PCP understand and excel in this role, which continues to expand as more neonates are able to survive challenging conditions.

1. Clinical skills required of the PCP

   1. Essential primary care skills

      1. Most skills that are needed in providing primary care to healthy children remain important in the care of high-risk infants.

      2. For example, how to deal with altered sleep patterns or how to follow and interpret a growth curve or manage different feeding difficulties are important general pediatric skills that, while the approach may be different in the NICU graduate, are essential for optimizing care in this high-risk population.

      3. NICU graduates still require standard vaccines and have common childhood illnesses such as otitis media; having a way for families to access appointments and regular patient care, be it through telephone or electronic means, is crucial, so that they receive primary care from a consistent provider.

      4. It is essential to have an excellent handle on typical development of healthy infants as well as common patterns in medically fragile infants. This will allow the pediatrician to ensure that growth and development are catching up at an appropriate pace. Focusing on what the child has learned since last visit can help provide longitudinal data on improving development. Additionally, asking a family what their child has learned how to do since the last visit provides them an opportunity to “brag” about their child, which they often have not had the opportunity to do if their child is significantly delayed.

   2. Knowledge of comorbidities

      1. The PCP must have familiarity with comorbidities and complications faced by the NICU graduate in order to optimize their care.

      2. These include those conditions commonly managed by general pediatricians as well as those managed by subspecialists, which allows the primary care pediatrician to recognize ominous signs and symptoms even if management requires subspecialty intervention.

   3. Dual role of the PCP

      1. Direct management

         Gastroesophageal reflux disease, anemia of prematurity, and osteopenia of prematurity are all examples of common conditions of the preterm NICU graduate that are largely managed by primary care pediatricians. Knowledge of appropriate pharmacologic and nonpharmacologic management of these conditions may contribute to the ability of these patients to grow sufficiently and may decrease the risk ...