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With advances in obstetrics and neonatal care, more premature and critically ill newborns are surviving to neonatal intensive care unit (NICU) discharge and entering the world of outpatient medicine.
With advances in obstetrics and neonatal care, more premature and critically ill newborns are surviving to neonatal intensive care unit (NICU) discharge and entering the world of outpatient medicine. Of NICU graduates, 20% to 40% have complex medical problems, which means approximately 110,000 high-risk infants are discharged yearly in need of specialty outpatient services and frequent primary care visits.1,2 These infants use substantial medical resources and are at high risk for rehospitalization.3 We have previously shown that within the first 4 months after NICU discharge, very-low-birth-weight (VLBW) infants (birth weight <1500 g) have, on average, 6 pediatric primary care visits and 1 emergency department visit. Further, as many as 24% of VLBW infants are readmitted to the hospital. Infants with the highest medical complexity, those needing mechanical ventilation and/or tube feedings, may need as many as 26 outpatient visits during infancy.4
Outpatient care of NICU graduates is challenging. Pediatricians must be knowledgeable about and treat a wide variety of morbidities and comorbidities of prematurity and intensive care. They act as case managers for infants with rare and serious conditions and coordinate care among multiple subspecialists and service agencies. More than half of very preterm infants need neurodevelopmental follow-up, early intervention services (eg, physical, occupational, speech therapy), or home nursing care. Approximately a third use 4 to 5 healthcare services after discharge, and nearly 20% need 6 to 7 services in addition to pediatric primary care.5
Effective discharge planning for NICU patients requires knowledge of available community resources, understanding the capabilities of families, and coordination with local primary care practices.6 Information is lacking, however, about the challenges pediatricians face when caring for these vulnerable patients, even after a well-orchestrated hospital discharge. Much of the literature on children with special healthcare needs excludes infants or includes them in a category of children with a wide range of ages. The needs of pediatricians are rarely considered.
To better understand the needs of pediatricians, we surveyed members of the American Academy of Pediatrics (AAP) in the northeastern United States who self-identified as community outpatient pediatricians. The survey tool adapted from previous research addressed the many barriers pediatricians encounter when providing care to NICU graduates.7 Items assessed were comfort with caring for common NICU morbidities; interactions with subspecialists and early intervention programs; experience providing mental health support to parents for postpartum depression (PPD); and ease with palliative care and end-of-life decision making. Most questions were in the form of Likert scales, from “very comfortable” to “very uncomfortable,” or “very satisfied” to “very dissatisfied.”
Fewer than half (49%) of the 259 respondents were associated with a certified medical home. A medical home is defined by the Joint Commission’s Primary Care Medical Home Model and Agency for Healthcare Research and Quality as a model of primary healthcare that has patient-centered, comprehensive, coordinated, and superb access to care with a systems-based approach to quality and safety.8
Participants had a wide range of years in practice, having finished residency in nearly equal numbers across the decades from 1980 to present. As well, 20 respondents finished residency in the 1960s and 1970s.
In responding to our survey question about caring for common NICU morbidities, fewer than half of the pediatricians reported they were very comfortable caring for infants with congenital heart disease (28%); birth weight less than 1000 g (37%); short gut syndrome (14%); spina bifida (24%); chronic lung disease (35%); or hypoxic ischemic encephalopathy (27%). Most pediatricians (61%), however, were very comfortable caring for infants with trisomy 21 (Down syndrome).
The medical complexity of NICU graduates requires that pediatricians serve as case managers in addition to healthcare providers. We asked pediatricians about their comfort with case management responsibilities: 50% to 60% of respondents were very comfortable writing letters of medical necessity; determining the need for occupational or physical therapy, or speech therapy; and coordinating care among subspecialists. Pediatricians, however, were much less secure ordering adaptive equipment, home healthcare supplies, or assisting families accessing community-based resources, with only 26% to 37% being very comfortable with these activities.
We also asked about their interactions with subspecialists and community service providers. More than half of pediatricians were very satisfied with their ability to obtain subspecialty consultation, and approximately half were satisfied with the communication they received from subspecialists. They were unsatisfied, however, with their ability to obtain developmental pediatric and neurology consultation, wraparound services (ie, individualized community services for children and families with complex mental health needs), or mental health services for families in a timely fashion.9 These services were unavailable or had long waiting lists, or there was poor communication with the providers.
Knowledge of early intervention (Part C of the Individuals with Disabilities Education Act [IDEA]) may be particularly important because parents rely heavily on pediatricians for information and advice.10 Community pediatricians who understand the importance of early intervention monitor and refer families as necessary to such services provided by each state under Part C of the IDEA. Taking an active role as a member of the early intervention team, they can help create a standard of care for children with established disabilities, those at risk for developmental delays, and their families.11
In our survey, 47% of pediatricians were not very comfortable with conducting developmental screening and 41% were not very satisfied with their ability to get early intervention services for their NICU graduates. Nevertheless, 93% were very comfortable making a referral to early intervention and 62% were very comfortable helping families navigate the system. Only 17%, however, were very comfortable helping families develop an Individualized Family Services Plan (IFSP). Furthermore, only 24% of pediatricians reported being very satisfied with the communication received after a referral, with 7% reporting receiving no communication at all. This indicates a need for future research to identify the exact types of information that pediatricians seek from reports and to determine the barriers to receipt of such information.
Postpartum depression impedes a mother’s ability to adequately care for herself and to meet the physical, emotional, and developmental needs of her child.12–19 Neonatal intensive care unit graduates, whose mothers experience PPD, are at high risk for long-term negative developmental and health outcomes.20,21 The quality of early maternal care can have a significant role in ameliorating or exacerbating infant risk for long-term negative outcomes associated with a neonatal illness.21–32 As such, community pediatricians were asked about their practice of providing any type of mental health or stress evaluation of parents of NICU graduates. Not doing any type of evaluation was reported by 60%, but a third reported they did do some type of evaluation and most commonly the Edinburgh Postnatal Depression Scale was used for this.33
Each year, 40% of infant deaths occur among those with complex medical conditions, with NICU graduates being overly represented in this group.34 Although most infant deaths occur in the hospital, many parents would like to take their baby home, but there are inadequate pediatric hospice providers to support their wishes.35,36 We therefore asked pediatricians about their involvement with end-of-life/palliative care. Only 11% of community pediatricians were very comfortable providing these services to families, and only 13% were very comfortable finding respite care for families.
Community pediatricians reported multiple other barriers to optimal care for NICU graduates including, not surprisingly, reimbursement rates (62%). Presently, pediatricians receive $107 for a newborn well-child visit lasting, on average, 10 to 18 minutes.37–39 These pediatricians also cited time constraints (75%) and insufficient office help (45%). Inadequate residency training was cited by 37% of pediatricians as a significant barrier to care, whereas 48% reported a lack of clinical experience with high-risk infants impeded care. Further, 13% of pediatricians reported the absence of a local NICU follow up clinic as a very significant barrier to care for NICU graduates. Although commonly believed to be a barrier, we found that only 28% of pediatricians had significant medical legal concerns in caring for NICU graduates and even fewer (10%) reported a lack of interest in caring for these infants.
The AAP and the AAP Council on Children with Disabilities make recommendations for care of the high-risk infant with medical complexity. These recommendations provide guidance regarding medical and developmental follow-up and the necessity of having interdisciplinary and coordinated care plans to ensure that infants obtain optimal medical care and developmental support services and to minimize rehospitalization rates.40 Respondents to our survey, however, believe they are inadequately trained to care for the medical complexity of many NICU graduates and inadequately supported by the available community resources.
Given our data, collaborative efforts by tertiary care center NICUs, early intervention agencies, and community pediatricians could improve care for NICU graduates.
First, prehospital discharge planning meetings could be scheduled at a time when primary care pediatricians could participate. Follow-up programs by tertiary care center NICUs could provide continuing medical education about the complexities of caring for NICU graduates while allowing subspecialists and community pediatricians the opportunity to meet face to face and establish relationships. This simple step may improve communication.
Second, early intervention programs could use published guides (eg, Maryland’s Physician’s Guide), conferences, or other public awareness activities to foster pediatrician understanding of the IFSP process, the family-centered nature of the program and any direct costs to families, as well as the physician’s role in the early intervention process. To address physician need for increased communication after the referral, early intervention programs could include a physician feedback portion on their referral form. Maryland utilizes such a feedback loop, and, following the eligibility evaluation and, if applicable, development of the IFSP, the referral form is faxed back to the physician with the key information (see Maryland’s Physician’s Guide link, Section 3 of referral form). Armed with this knowledge, pediatricians and early interventionists can better collaborate in the process of seeking improved outcomes for NICU graduates.
Third, if hospital-based palliative care teams provided consultation and guidance services to community pediatricians, it could help support parents’ choice for end-of-life care at home.35
Fourth, the AAP could also increase continuing medical education on the care of NICU graduates at local and national meetings, and NICU follow-up could be incorporated more prominently in residency training curricula.
Finally, increased funding is needed for community resources (ie, mental health providers, wraparound services, early intervention) for high-risk infants, their families, and pediatricians. In a 2014 survey of Part C coordinators, the Infant and Toddler Coordinators Association found an increasing trend among states to implement or increase family fees, require families to use private insurance, and/or narrow eligibility criteria to address state fiscal issues impacting their early intervention program. Furthermore, 8 states noted having discussions related to dropping out of the federal early intervention program (Part C), with 4 states citing increased costs and 4 states indicating budget concerns as the rationale for this discussion.41
Although not a scientifically representative sample, we believe our data provide a glimpse into the experiences of community pediatricians caring for NICU graduates. Further research is needed to determine the realities of caring for medically complex infants recently discharged from the hospital. Such findings could help inform ongoing medical education and allocation of increasingly scarce resources.
With increased pressure to contain medical costs by reducing hospital length of stay and averting hospital readmission, the burden on community pediatricians caring for high-risk infants will only increase. Determining barriers to optimal care and addressing these barriers would translate into improved care for medically complex infants and their families.
Acknowledgments: We would like to thank Robert Cicco, MD, for his guidance with this project.
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Janice E. Hobbs, MD, MPH, and colleagues from Johns Hopkins School of Medicine and the University of Maryland School of Medicine recently surveyed over 200 community pediatricians in the Northeast about their perspectives in providing care for neonatal intensive care unit (NICU) graduates. The findings suggest that providers are comfortable with some aspects of NICU graduate care, but not other components, and provides insight on deficits in care plans for NICU graduates that primary care providers ought to consider. Dr. Hobbs is co-author of an article that appeared in Contemporary Pediatrics in our October 2013 issue on continuity of care for NICU graduates.