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.
Clinical skills required of the PCP
Essential primary care skills
Most skills that are needed in providing primary care to healthy children remain important in the care of high-risk infants.
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.
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.
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.
Knowledge of comorbidities
The PCP must have familiarity with comorbidities and complications faced by the NICU graduate in order to optimize their care.
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.
Dual role of the PCP
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 of acquiring problems postdischarge. It is also crucial to have a firm understanding and an organized approach to the necessary laboratory monitoring of these conditions with an ability to manage these results using medications and specialized diets.
Indirect management
With subspecialists often involved in the care of complex comorbidities, such as chronic lung disease, congenital heart disease, etc, it is usually up to the general pediatrician to assist by weight-adjusting medications, following laboratory tests, and educating families regarding medications, treatments, and outcomes. Additionally, the primary care office is an important site for the coordination of preventative care of these morbidities, such as the administration of palivizumab (passive immunization against respiratory syncytial virus) and influenza vaccine.
Recognition of post-NICU acute illnesses
While most life-threatening acute conditions cannot be adequately treated in a primary care office, they are often identified in this setting.
An awareness of different presentations of common pediatric illnesses, as well as an understanding of unique acute illnesses that the NICU graduate is at risk for, may contribute to early intervention for serious illnesses such as shunt failure and infection, aspiration pneumonia, pulmonary edema, dehydration, and acute abdominal illnesses such as a bowel obstruction.
In addition to a strong medical fund of knowledge, this requires knowing (and having easy access to) the patient’s history and their up-to-date medication list.
Also, familiarity with the patient’s baseline physical exam (especially cardiovascular, respiratory, abdominal, and neurologic) may help recognize ominous changes. This may also prevent overusage of the emergency department and perceived need for hospital admissions without changes in the patient’s actual status.
It is also important to pay close attention to the caregiver’s perception of their child’s symptoms and if they think their child appears or is acting differently than usual.
Knowledge of other conditions seen in high risk infants
Although the majority of patients in the NICU are born prematurely, there are other conditions requiring neonatal intensive care whose natural history a primary care pediatrician should be familiar with.
While these infants have many of the same medical and developmental problems as premature infants, requiring many of the same interventions, the trajectories of their medical conditions will vary given their underlying diagnosis.
For instance, NICU patients with persistent pulmonary hypertension and hypoxic-ischemic encephalopathy, similar to extremely low birthweight infants, may have chronic lung disease, adrenal insufficiency, feeding difficulties, and hypotonia with gross motor delays at discharge, but will have very different clinical courses during the first year of life.
It is also important to be familiar with various types of congenital heart disease (along with their surgical repairs, complications, and physiology), airway anomalies, and genetic disorders, so that management of these patients can be optimized. General pediatricians are not expected to diagnose every rare condition affecting infants, but they should be the expert on each of their patients.
Developmental surveillance
Whether due to prematurity or other conditions, it is well recognized that NICU graduates are at high risk of developmental disabilities and difficulties in school. This includes learning disabilities, cerebral palsy, mental retardation, attention deficit and hyperactivity disorder (ADHD), and autism spectrum disorder. The severity of these conditions varies tremendously from patient to patient.
The PCP should approach developmental progress in the NICU graduate with the goal of maximizing each infant’s potential, rather than looking at standard developmental milestones.
It is important to have a low threshold for referral for early intervention services such as physical, speech, and occupational therapy.
It is also essential to maintain good communication with the parents and to help them in setting and achieving meaningful, but realistic, goals for their children.
Knowledge of common medical equipment
While pediatricians cannot know everything about every piece of medical hardware, it is important to have a basic understanding of more common durable medical equipment utilized in infants, including apnea monitors and oximeters, home oxygen therapy, tracheostomies, gastrostomy tubes, and VP shunts.
An essential part of primary care visits for technology-dependent infants includes reviewing that their hardware is working well, they have enough of the correct supplies, the family understands proper usage, and there are not associated medical complications, such as infection.
Pediatricians should utilize clinic support staff, such as nurse clinicians, to assist with teaching proper use of this equipment and should have familiarity with the local home health care companies and know contacts within each.
Knowledge of baseline clinical status
Knowing the patient’s baseline status and their family’s interpretation of symptoms is a difficult, subjective, but important skill.
Having this baseline knowledge can be the difference between an unnecessary hospital admission and allowing a child to be cared for at home.
A misunderstanding can lead to a serious adverse outcome if a symptom is minimized by the parents and thus not evaluated. Some families will, either consciously or subconsciously, underreport the severity of a symptom due to denial or not wanting to face another hospitalization.
Longitudinal relationships with complex patients and their families will help provide physicians with this baseline knowledge necessary to make wise decisions.
Organizational skills required of the PCP
While a strong medical fund of knowledge is clearly important to provide care for high-risk infants, it is also crucial to be organized and efficient in the approach to their care, especially given the need to maintain a full patient load.
Communication
A key aspect of organization and efficiency is the ability to communicate well with other providers, both before and after the baby has been discharged from the hospital.
It is helpful if the care team in the NICU will provide an accurate and thorough, but succinct, written summary of the patient’s NICU course prior to the initial outpatient visit. It is also helpful to have an actual conversation to ensure that all the proper parts are in place for discharge and follow-up.
High-risk infants are often followed by multiple subspecialists, who may suggest changes in management. It is important to be able to communicate with them, especially given that the family might not fully understand the changes being made (or the rationale). There will also be times that it will be necessary to communicate to a specialist about a concerning change in the patient’s status. Thus, having a list of the primary subspecialty providers for each patient will help streamline communication during a busy clinic day.
It is also helpful for the primary care pediatrician to serve as a coordinator of care—this assists the family with making multiple clinic visits or studies, especially if requiring sedation so as to be performed at the same time.
These patients are at high risk of hospital readmission, and it is imperative to discuss the patient’s course with the inpatient team to assist in their successful inpatient care and discharge. In 2008, the AAP revised their policy statement on hospital discharge of the high-risk neonate, which outlines some of these prudent steps to be taken by both sides.
Efficiency
Organization also leads to more efficient care.
Without being efficient, even the most knowledgeable and hardworking pediatrician cannot provide effective care for these patients (and still take care of all the other patients on their schedule).
Reading through the records of complex patients the day before their clinic visit will help the pediatrician anticipate problems and concerns that are likely to come up during the appointment (it often helps to have a plan for how to deal with these beforehand). This may also diminish the likelihood of repeating lab tests that have been performed recently by other providers.
A preorganized note template may streamline documentation and ensure that all necessary topics are addressed during a visit (Figure 3-1).
Follow-up
Given the variety of follow-up necessary in their care, having a thorough method to follow-up on laboratory results and changes in plans by consultants will ensure that things do not fall through the cracks. This may include keeping a notebook or utilizing an EMR to provide reminders of things to follow-up over the course of a given week.
While the approach can (and should) change over time, having a consistent, regimented approach to following labs, changing medication doses, altering feeds, and ensuring therapies are in place will aid in the provision of comprehensive care to NICU graduates.
Knowledge of resources
Another important aspect of efficient and efficacious care is an understanding of which resources are available within the health care system and the community.
It is helpful to be familiar with several home health companies and to have a reliable way to contact them. Knowing which agencies provide the best therapies for given conditions and which agencies have multilingual staff may help patients achieve their maximum potential.
If there are social workers or nurse clinicians available, they may be of great help in the coordination and access of services.
Challenges for the PCP
While it is extremely rewarding to provide care for the high-risk infant, there are many challenges that may serve as obstacles.
Time management
Within the scope of a busy primary care practice, and with the complexity of NICU survivors increasing, it may seem overwhelming to manage these patients. This is why efficiency and organization are both so important.
When possible, delegate tasks to other members of the medical team.
It is useful to be able to anticipate problems before they occur, and organization goes a long way toward being able to do this. Looking at each patient encounter as an opportunity to make at least a single, positive change in their care may also make their management seem less overwhelming.
Frequent follow-up
The need for very frequent follow-ups within short amounts of time for the highest risk patients may make scheduling difficult, especially if a pediatrician has a busy patient panel, as it might be difficult to find available appointments.
One potential solution is to have reserved “complex follow-up patient” slots that may be opened up to acute care visits for other patients if not filled.
If visits are relatively frequent, at least early on, this makes the visits less overwhelming as there are fewer issues to tackle. If this is not possible, it might make sense to allow for longer visits for these patients (and bill accordingly; see Appendix E).
It is often useful to bring these patients back frequently, on a weekly or biweekly basis, to minimize the amount of issues that need to be addressed at each appointment, thus allowing the provider and family to devote more time to each individual concern.
Coordinate appointments around when subspecialists are seeing the patient (most patients do not need to see the primary care pediatrician on the same day that they are seeing the pulmonologist, for example) and schedule when studies or interventions such as labs, routine immunizations, and palivizumab or flu shots are needed.
This is especially true during winter months, as there is a fine balance between monitoring these patients closely and exposing them to potential respiratory illnesses in the office!
Staying current
Another obstacle to care of these patients is the constant change in medical knowledge and development of innovative technologies.
It is impossible to stay up to date on everything, but it is possible to devote some continuing education time to relevant topics in order to provide ongoing excellent care for these patients. Keeping up with evidence-based research on interventions and outcomes can help families make informed decisions about their children’s health.
Engaging subspecialists in discussion about the rationale behind their treatment decisions is a useful way to learn how to manage new issues.
Social concerns
Proper care of high-risk infants often requires dealing with complex social situations. Sometimes, making medical recommendations for a patient is the easier task; the more difficult task sometimes proves to be in the execution of the plan by the family.
There are many factors that may contribute to this: poor literacy, poor resources and financial limitations, lack of support, transportation difficulties, mental illness, and substance abuse are just a few.
Learning how to not internalize or be judgmental of these problems is one important component of providing long-term care to these patients.
If social concerns lead to poor compliance of treatment regimens, community resources need to be utilized to help get patients to appointments and keep them adherent with the treatment plan. While referrals to state-supported departments of social services may have negative connotations, they may be necessary for ensuring that the child and family receive the proper support to allow the child to thrive in the community.
Due to the emotional strain that comes from having a sick infant in the NICU for an extended period of time, there are some unique considerations involved in caring for these patients longitudinally. Some parents become overprotective and even indulgent (the “vulnerable child”); it is hard for them to push and challenge their children when they get older. On the other hand, due to either denial or not wanting to face more medical hardship, there are some parents who may minimize their children’s symptoms to avoid yet another hospitalization or medication.
End-of-life decision making
Many physicians, especially primary care pediatricians, are not comfortable discussing end-of-life decision making with their patients and families.
While many NICU graduates outgrow their conditions, there are others who remain medically fragile throughout childhood.
It is important to ensure that periodically, when the child is not acutely ill, that this topic is discussed with the family. DNAR discussions are best held when parents are well rested and urgent decisions are not necessary.
It is important for parents to know that their pediatrician will educate them about their options and be supportive of their decision. It is also important for them to know that this decision can be fluid over time; as such, asking about it periodically can help them consider a topic that they otherwise may try to avoid thinking about and discussing as a family.
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