Abstract
Introduction
Of the 4 million infants born each year in the United States, up to 12% are born prematurely (i.e. less than 37 weeks’ gestation) and approximately 2% of infants are born at less than 32 weeks’ gestation [1]. In the past 20 years, neonatal intensive care units (NICUs) have provided progressively more advanced and skilled care of premature and sick infants. Consequently, NICU graduates have benefitted with decreased mortality rates [1–3] but, survivors remain at high risk for long-term neurodevelopmental and medical sequelae [3–7]. About 20 to 40% of infants born prematurely have complex needs that require a coordinated follow-up which includes a multidisciplinary team of physicians, rehabilitative services, visiting nurses, social workers, and nutritionists [8].
In recent years, the concept of a “medical home” has become a widely accepted model for how primary care should be organized and delivered throughout the health care system. In the medical home, health care is centered around the patient, with providers collaborating to provide team-based, coordinated, accessible, and quality and safety focused care in order to maximize health outcomes [7]. Primary care physicians assuming care of discharged premature infants often assume the role of leader and director of their patient’s medical home. Some of these physicians may feel overwhelmed by their patients’ multiple health and social problems. Their challenges begin with obtaining a thorough turnover of information from the discharging NICU, a process which is susceptible to communication errors and omissions. Pediatricians in private practice also vary widely in their practice model and resources, both human and financial. Solo practitioners and those with high patient loads may be overwhelmed by the level of service required of complicated patients. Pediatricians must also act as counselors in helping parents emotionally cope with a child with multiple needs. The American Academy of Pediatrics (AAP) has sponsored workshops and developed guidelines for the care and follow-up of the high risk former premature infant [8, 9]. However, these guidelines do not address the immediate post-hospital discharge care, nor do they acknowledge the frustrations and obstacles faced by primary care pediatricians responsible for this vulnerable population.
The purpose of the study was to illuminate and relate the perceptions and experiences of pediatricians in the post-discharge continuing care of former premature infants. In particular, the study sought to enumerate which specific aspects of the medical care and healthcare system pediatricians believed were most challenging when caring for premature infants.
Methods and study design
The study was a descriptive, cross-sectional survey consisting of 22 items that involved physician hand-offs and neonatal-related knowledge and practice approach in caring for premature infants. Survey questions were emailed to pediatricians who are current members of the AAP and practicing in Kings County, New York. All necessary information including pediatricians’ names, practice, and email addresses are obtained from the AAP website. Of 536 pediatricians identified, 480 met the inclusion criteria. Some questions were phrased in the form of a Likert scale, varying from “never” to “always.” The survey questions were designed to reflect the physicians’ experience, content, perception, knowledge, and attitude in caring for premature infants. The survey was approved by the Institutional Review Board. Surveys were sent via electronic mail using web-based survey software (SurveyMonkey, Palo Alto, CA). The survey was designed to be anonymous and accept only one response from each participant. A cover letter was also sent with the survey, explaining the purpose of the study and its design. We offered no incentives for participation. Two additional requests to all non-respondents were sent at 3-week intervals. Data from the respondents was entered into Excel for data analysis, including count and frequencies of responses to survey questions. Data are presented as percentage of respondents or responses (in multiple select questions). A multiple linear regression model was designed in order to estimate the factors most likely to impact certain practice attitudes. Statistical analysis was done with the SPSS software v.21 (Chicago, IL).
Results
Of the sent surveys, 148 (31%) were completed, 79% were general pediatricians, 10% neonatologists, and 16% other specialties. Physicians with 1–5 years of experience represented 42% of all respondents, whereas 44% had more than 15 years’ experience (Table 1). On average, 63% of pediatricians saw 1–5 premature babies every week, and 63% believed that premature infants should have their first high risk follow-up visit within days after NICU discharge, whereas 25% consider 2-3 weeks after hospital discharge to be an appropriate time frame (Table 1). When asked whether they received a discharge summary, 62% of pediatricians indicated that they would always or often receive a discharge summary from the NICU when assuming care of premature infant whereas 38% of physicians rarely or sometimes received a discharge summary (Table 1). Of the pediatricians surveyed, 64% were satisfied with the method by which they receive a NICU discharge summary (Table 2). Discharge summaries were received electronically by 42% of pediatricians, whereas 46% were handed printed summaries by the parents or caregivers (Table 1). While 22% of respondents answered they sometimes receive a post-consult document within a “reasonable”time frame from a neonatal follow-up clinic, 64% reported that they rarely receive a communication from a consultant. Most of the respondents (82%) said they would like to have access to their patient’s electronic medical record or receive emails or facsimiles of patient information (Table 2). Overall, 74% stated they felt comfortable following up former extremely premature infants (less than 28 weeks’ gestation) in their practices (Table 2). The most common medical problems identified by pediatricians were delayed milestones (56%), gastroesophageal (GE) reflux (54%), feeding problems (46%), speech delay (42%), chronic lung disease (40%), poor weight gain (40%), muscle tone problems (39%), and asthma/wheezing (38%) (Fig. 1). However, the conditions pediatricians identified as most challenging to manage were cerebral palsy (24%), feeding problems (20%), attention deficit and/or hyperactivity (18%) and autism or psychiatric problems (17%) (Fig. 2). The top 3 specialists to which NICU graduates were referred are child development (56%), neurology (46%) and physical and/or occupational therapy (41%) (Fig. 3). The majority of respondents (85%) always or often referred premature infants regardless of birth weight (BW) or gestational age (GA) for early intervention assessment (Table 3).

Commonly encountered medical problems of premature patients (multiple select- question 11).

Most common conditions found challenging to take care of in practice setting (multiple select – question 12).

Specialist’s premature patients are commonly referred to (multiple select, question 13).
Responses in regard to pediatricians’ demographics, transition of care and outpatient follow-up
Responses in regard to satisfaction with current hand – off process and comfort in caring for premature infants
Responses in regard to referral to specialists and early intervention
Of the pediatricians surveyed, 53% chose to always give breast milk to growing former premature infants in the first 6–9 months of age, whereas other choices (standard formula with no weight-gain issue, high caloric formula with no weight gain issue, or whatever is recommended by NICU upon discharge) were selected almost equally (Table 4). In addition, 65% of pediatricians rarely recommended organic formula or probiotics-containing formula (Table 4). With regard to solid foods, 38% of pediatricians chose to introduce solids at 4–6 months adjusted age, while 31% responded that solids should be introduced whenever the infant seemed to be ready. 25% of the surveyed pediatricians chose 4–6 months chronological age to start baby food (Table 4).
Pediatricians’ perspectives of nutrition, vaccination of premature infants and stress levels of primary caregivers of the premature infant
The results of our survey showed pediatricians vary in their immunization patterns of former premature infants. Regarding the timing of the administration of the first dose of the Hepatitis B vaccine (HBV), 52% preferred to wait until the baby is 1-month of age or at hospital discharge regardless of discharge weight, while 34% answered that it should be given at 2 months of age (Table 4). Of the surveyed pediatricians, 27% believed that most former premature infants with extended hospital stays have out-aged the maximal age limit for the rotavirus vaccine, whereas 43% thought that this occurs only “sometimes”. In addition, 44% of pediatricians believed that caregivers of a former premature infant always or often receive influenza vaccine annually while 39% believe that they sometimes do (Table 4).
We also found that 88% of pediatricians believed parents of former premature infants experience increased stress. Within this subgroup, 53% thought parental stress required attention, whereas 35% thought parental stress had no impact on their infant’s care (Table 4). In our survey, we found that pediatricians who see higher weekly numbers of premature patients in their practice or defer referring them early after discharge to neonatal follow-up clinics, are likely to be comfortable with taking care of former extremely premature infants (OR 3.22 and 6.4 respectively) (Table 5). We also found the longer a physician is in practice or the lower the number of premature infants seen, the more likely they are to refer premature infants to specialists (OR 1.32). However, referral for early intervention evaluation correlated only with years in practice (OR 1.46) (Table 5).
Regression model of significant predictive variables for referral to certain practice attitudes
*P < 0.05. OR,odd ratio; CI, confidence interval.
Pediatricians assume the role of leader of the medical home for discharged former premature infants and thus are responsible for ensuring the proper follow-up of this vulnerable population [7]. Most of the pediatricians surveyed will be caring for premature infants well past their infancy, consequently making it important to understand their viewpoints and facility in caring for these patients. The majority (74%) of pediatricians surveyed felt comfortable providing care for premature infants. The level of comfort correlated with the number of patients served (Table 5).
The initial transition of care from an inpatient to outpatient setting is a vital step in the long term care of NICU graduates. Most pediatricians recommend an initial neonatal high risk follow-up visit within days of discharge (Table 1). This visit is important for discerning the patient’s history, ongoing medical issues, and required specialty follow-ups. Several studies have demonstrated defects in communication and information transfer between hospital and primary care physicians [10–13], in part due to the lack of interface between the two medical record systems. These deficiencies in communication can lead to mismanagement of the patient due to lack of knowledge concerning hospital course, diagnoses, discharge medications and follow-up plan [10]. With the advent of the electronic medical record, communication between the NICU and primary care physician is made easier, as the latter can seek access to the hospital medical records. However, there are instances when the primary care physician does not have access to the medical record network of the discharge hospital. As an alternative, discharge summary papers can be handed over by parents to primary care physicians, or information can be emailed or faxed to the primary physician, all of which were preferred over the verbal handoff in the transition of care. While 64% of physicians are satisfied with the way in which they receive the discharge summary, there is a remaining 38% that are not satisfied (Table 2). This could be due to the fact that not all pediatricians receive a discharge summary, with only 62% of those surveyed stating that they always or often receive the summary. Also, dissatisfaction may due to the modality by which discharge summaries are received. Only 42% of physicians receive an electronic summary and 44% receive the discharge summary via the parents (Table 1). It is possible that increasing the number of electronic discharge summaries may increase satisfaction among physicians and ensure a seamless transition of care. It may also be helpful for pediatricians to maintain a checklist of required information in order to track the acquisition of health records and information.
Although premature infants are stable at the time of discharge, they often have residual medical issues or chronic conditions for which primary pediatricians will be responsible [14]. These issues may be present at the time of discharge from the NICU or may present at a later date. One of the primary goals of our study was to delineate which clinical problems most commonly arise. We found that delayed developmental milestones was the most common complication followed by GE reflux, feeding problems to certain textures and consistencies, speech delay, and sequelae of chronic lung disease (Fig. 1). Another important question was which of these problems do pediatricians find most difficult to manage (Fig. 2). The data indicated cerebral palsy, feeding problems and neurodevelopment disorders were the most challenging for pediatricians, followed by autism or psychiatric problems. Lastly, we surveyed to which specialists pediatricians most often refer their patients. The data identified developmental-behaviorists, neurologists and physical and/or occupational therapists as the most frequent consultants (Fig. 3). Early intervention services are often required for former premature infants, but eligibility criteria vary from a state to state. Primary care physicians are responsible for following up with the family to ensure that the infant is receiving appropriate services specific to his/her needs. The majority of our surveyed pediatricians refer their former premature patients to early intervention (Table 3) and this positively correlates with years of practice (Table 5). However, it is not clear from the study if this correlation relates to physicians’ individual awareness of services available to NICU graduates or a reflection of the greater number of morbidities in these patients.
The nutritional needs of the premature infant during the hospital stay vary based on the GA, BW, and subsequently how well the infant grows post-conception. Although there is insufficient evidence to prescribe a uniform feeding regimen for all very low birth weight (VLBW) infants after discharge, the general consensus is that human milk is the preferred nutritional choice [15, 16]. Breastfeeding has been shown to have many benefits in the premature infant; including but not limited to, decreased incidence of infection and improved neurodevelopment [15]. Yet, only 53% of the respondents agreed that mothers of premature infants should breastfeed for the first 6 to 9 months of life (Table 4). This lack of agreement on breast milk may be due to misconceptions about premature babies optimal feeding regimen. Certain subgroups of infants will be at risk for poor nutritional status after discharge [16] and health care providers should monitor breast milk supply, nutrient transfer, and adequate intake. Growth must be measured not only by weight-for-age but also by weight-for-length and head circumference. If these growth parameters begin to stagnate or decline, additional measures may have to be taken in regard to introducing formula [16–18]. With respect to the initiation of solid foods, the AAP currently recommends exclusive breastfeeding for the first 6 months of life, delaying solid foods until the second half of the first year [18]. There is no clear guideline on the optimal time to introduce solid foods to preterm infants which is reflected in the varying answers of our pediatricians A majority (38%) favored introducing solids at 4–6 months adjusted age, but other answers included starting when the infant is ready and 4–6 months chronological age (Table 4). The lack of consensus is possibly due the deficiency of recommendations from the AAP.
Vaccinations are another important preventive health measure for premature infants. While birth dose of HBV should be administered to term infants of HB surface antigen (HBsAg) negative mothers before hospital discharge, it should be delayed for infants who weigh less than 2 kg at birth until one month of age or until hospital discharge [19]. The responses to this question are widely varied with a small majority (34%) agreeing that the HBV should be given to these premature infants who weigh less than 2 kg at 2 months of age (Table 4). Our mixed responses may be due to the ambiguity of the question, given that the recommended schedule for HBV administration is based on the maternal antigen status. With regard to the Rotavirus vaccine, 30% of those surveyed found that NICU graduates always or often are unable to receive the vaccine because the hospital stay extends beyond the recommended age range for administration (Table 4). The AAP recommends vaccination against Rotavirus for infants beginning at six weeks of age [20]. At this time, the AAP recommends against administering the vaccine while patients are in the NICU as vaccinated infants have been shown to shed the virus in their stool and this presents a theoretical risk of transmission to other NICU patients [21]. However, this practice may be withholding an immune-protective intervention from a population at a higher risk for hospitalization and complications [22]. Several NICUs have reported their experience with in-hospital administration of the Rotavirus vaccine, showing tolerance within recipients, and no measurable signs of symptomatic hospital acquired transmission to cohorts [21, 22]. We predict these recommendations may change as more NICUs trial inpatient administration of the Rotavirus vaccine and demonstrate that the benefits of inpatient vaccination outweigh the theoretical risk of viral shedding and transmission [21].
There is evidence that prematurity is associated with negative psychosocial and emotional effects on caregivers, especially with extremely low birth weight (ELBW) and high-risk VLBW infants [23, 24]. Our survey showed that the majority of pediatricians believed that caring for a NICU graduate causes increased stress in the caregiver (Table 4). About half of them believed that this increased stress needed to be addressed while the remaining did not think that it affected patient care or outcomes. When compared to mothers of term babies, mothers of premature VLBW infants showed increased levels of anxiety and depression at the time of discharge [23]. In addition, families of ELBW and high-risk VLBW infant’s experienced greater stress compared to families of term infants [24]. It has been shown that maternal depression can have negative effects on infants’ development and health regardless of GA [25, 26]. These negative effects include poor weight gain, increased gastrointestinal illness, behavioral issues and weak academic performance. And as demonstrated by the Singer study [23], the severity of maternal depression was linked to development of the VLBW infant [24]. It is important for pediatricians to assess the family dynamics during visits and refer the caregiver and/or family to counseling ifneeded [24].
Limitations
Prior to the initiation of our study, there were no similar published studies that addressed the topic of pediatricians’ perspectives in caring for premature infants. Consequently, we had no comparative studies to assist us in establishing a specific design or validate survey questions. Our study is important and unique as it elicited pediatricians’ opinions on a broad scope of topics, including transition of care, practice resources, professional familiarity, health maintenance, and disease prevention. However, the comprehensiveness of the survey may have been a factor in the low percentage of respondents. Another limitation is that our population was restricted to physicians practicing in King County, New York who are also members of the AAP, and of these, only 31% responded to our online survey. Thus, our results may not be generalized to all pediatricians. We hope this study will shed light on the challenges pediatricians face in their encounters with the sometimes complicated former prematurepatients.
Conclusion
Caring for a NICU graduate can be a complex and challenging undertaking for pediatricians, especially for general practitioners. Comprehensive discharge summaries are an important aspect of transition of care from the inpatient to the outpatient setting. This process is imperfect and we speculate that increased use of electronic medical records will aid in the future care of former preemies. Also, it is important that pediatricians remain up-to-date on current recommendations for breastfeeding and vaccination considerations in premature infants. Lastly, pediatricians should screen for psychosocial issues that may affect their premature patient as well as family dynamics. Patient visits should center not only on medical issues but on whole family dynamics. In the future, we hope to further study the improvement of NICU-to-physician hand-offs. Also, we would like to study how to improve pediatrician knowledge on recommendations regarding breastfeeding, vaccination scheduling, and perspectives regarding other health system challenges and other aspects of outpatient care for these infants and theirfamilies.
Funding source
No external funding was secured for this study.
Financial disclosure
The authors have no financial relationships relevant to this article to disclose.
Conflict of interest
The authors have no financial conflicts of interest to disclose.
Footnotes
Acknowledgments
The authors would like to thank Usama Samaan, Meenu Sood, MD and Brian Garrido, for their help to accomplish this study.
