Maternal and Child Health Journal

https://doi.org/10.1007/s10995-019-02818-0

FROM THE FIELD

Development of a Multidisciplinary Medical Home Program for NICU

Graduates
Katie Feehan1   · Folasade Kehinde2 · Katherine Sachs1 · Roschanak Mossabeb3 · Zek Berhane4 · Lee M. Pachter5,6 ·
Susan Brody7 · Renee M. Turchi1,4

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Abstract
Objective  Typical primary care practices are often not equipped to meet the medical, developmental or social needs of
infants discharged from a neonatal intensive care unit (NICU). These needs are exacerbated for infants and caregivers resid-
ing in poverty. This article discusses a multidisciplinary, family-centered medical home designed to address the needs of
this special population.
Methods  This is a descriptive analysis of a cohort of patients in the Next Steps Program (NSP), a multidisciplinary primary
care medical home. Key program elements include: continuity of care from the NICU to primary care, routine developmental
surveillance, care coordination, and proactive screening to address medical and social needs.
Results  The NSP has become a primary referral source for local NICUs, with a total of 549 medically fragile infants enrolled
from its inception in 2011 through 2016. Caregivers and patients experience psychosocial stressors at averages statistically
significantly higher than the rest of the Commonwealth of Pennsylvania and the US. Although patients in the program use
medical resources beyond that of typically developing infants, hospital utilization among this patient cohort is trending down.
Discussion  Caring for medically fragile NICU graduates can be daunting for families given the array of necessary services,
supports, and resources to maximize their potential. A multidisciplinary primary care medical home, such as the NSP, is a
successful model of patient care demonstrating favorable associations with health care utilization, care coordination, and
addressing/improving family functioning and their experience.

Keywords  Neonatal intensive care unit (NICU) · Medical home · Prematurity · Care coordination · Family centered care

Significance
* Katie Feehan
kam442@drexel.edu
The standard of care for NICU graduates is referral to a
1
Center for Children and Youth with Special Health Care neonatal follow-up program separate from their primary care
Needs, St. Christopher’s Hospital for Children, 160 E. Erie office. As neonates are now surviving as early as 22 weeks
Ave, Philadelphia, PA 19134, USA gestation many leave the NICU with an array of comorbid
2
Department of Neonatal‑Perinatal Medicine, medical conditions (Mercer 2017). These infants require
St. Christopher’s Hospital for Children, Philadelphia, PA, vital services to maintain and improve functioning. The
USA
need for a multidisciplinary primary care medical home with
3
Department of Neonatal‑Perinatal Medicine, Temple integrated developmental follow-up is essential. A program
University Hospital, St. Christopher’s Hospital for Children,
Philadelphia, PA, USA model such as the NSP is lacking in the pediatric primary
4 care arena. The development and description of this novel
Dornsife School of Public Health, Drexel University,
Philadelphia, PA, USA model of care is the focus of this article.
5
Value Institute, Christiana Care, Newark, DE, USA
6
Thomas Jefferson College of Population Health,
Philadelphia, PA, USA
7
NextGen System Support, St. Christopher’s Hospital
for Children, Philadelphia, PA, USA

13
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Introduction
Prematurity and Related Medical Complications
Approximately 11% of infants in the US are born pre-
term (< 37 weeks gestation), 1.92% are born very preterm
(28 to < 32  weeks) and 0.6% are born extremely preterm
(< 28 weeks) (Martin et al. 2015). Another 1% of full term
infants present to the NICU for serious illness or complica-
tions post-delivery (Bockli et al. 2014). As medical interven-
tions have advanced, the margins of fetal viability may begin
at 22 weeks gestation (Mercer 2017). As an increasing number
of extremely preterm infants survive, many experience a pro-
tracted NICU course with complex medical needs continuing
beyond discharge.
Preterm infants may have significant diagnoses including
but not limited to: chronic lung disease, apnea of prematurity,
difficulties with oral feeding, growth, gastroesophageal reflux,
inguinal hernias, retinopathy of prematurity, hearing loss, and
an increased risk of sudden infant death syndrome (Bockli
et al. 2014; Fanaroff et al. 2007). Low birth weight and early
gestational age are documented risk factors for developmen-
tal delay, cerebral palsy, and behavioral disorders (Johnson
and Marlow 2011). A significant number of preterm infants
are being sent home on apnea and heart rate monitors, oxy-
gen, high calorie formulas, nasogastric and gastrostomy tubes
(Bockli et al. 2014).
Sociodemographic Disparities and Social
Determinants of Health
Disparities in preterm versus full term births exist across
maternal sociodemographics. Risk factors include: maternal
age < 16 years and > 35 years, unmarried women, low-income
status, delayed/inadequate prenatal care, poor nutrition, phys-
ically demanding work, and risky behaviors (Behrman and
Butler 2007). African American women are three times more
likely to give birth to a very preterm infant compared to non-
Hispanic white and Hispanic women, even after controlling
for socioeconomic status (Kramer and Hogue 2009). Protec-
tive factors (education, prenatal care) for non-Hispanic whites
do not carry the same effects for African Americans births
(Kramer and Hogue 2009). This disparity is related to the
culmination of exposures throughout the maternal life course
and thus multifactorial including psychosocial and physical
stressors at an increased level compared to women with full
term infants. (Kramer and Hogue 2009; Schappin et al. 2013).
Family‑Centered Medical Home
Care for NICU graduates is often fragmented, with a focus
on neonatology follow up and less emphasis on primary care
13
Maternal and Child Health Journal
(Kuo et al. 2017). An analysis of the National Survey of
Children’s Health found that only half of preterm toddlers
received care in a medical home. Of the toddlers not receiv-
ing care in a medical home, caregivers were more likely to
be under 30 years of age, and report lower socioeconomic
status (Boone et al. 2018). Given the complex medical needs
and costs associated with this growing population of infants,
coupled with known socioeconomic disparities, some have
proposed a “care system redesign” to effectively manage
their unique needs (Kuo et al. 2017). Demand has increased
for integrated, coordinated, medical and developmental fol-
low-up employing a medical home model of care. The Next
Steps Program (NSP), a patient and family-centered medical
home directly reflects such a care system redesign. Under
direction of the American Academy of Pediatrics (AAP) the
medical home concept includes seven core characteristics:
accessible, family-centered, continuous, comprehensive,
coordinated, compassionate and culturally effective (Ameri-
can Academy of Family Physicians, American Academy of
Pediatrics, American College of Physicians 2007).
An essential element of the medical home is care coordi-
nation. Per the AAP Policy Statement: Council on Children
with Disabilities (COCWD 2014):
Patient-and-family-centered, assessment driven, team-
based activity designed to meet the needs of children
and youth while enhancing the care giving capabilities
of families. Care coordination addresses interrelated
medical, social, developmental, behavioral, educa-
tional and financial needs to achieve optimal health
and wellness outcomes (p. e1452).
By considering the various factors influencing the
patient’s quality of life, care coordinators work in the “space
between” patient encounters within healthcare systems to
support families in achieving optimal health outcomes (AAP
Policy Statement: COCWD 2014).
Methods
Since inception in 2011 the mission of the NSP is to pro-
vide high quality care to medically complex infants via a
coordinated primary care medical home, with the addi-
tion of integrated developmental follow-up. For program
eligibility, medical complexity is defined as infants who
are very or extremely premature < 32 weeks gestation, or
older gestational age/full-term infants with multiple chronic
co-morbid diagnoses or syndromes. This includes infants
discharged from the NICU with any medical technology,
severe congenital heart disease, neurologic impairment, a
history of necrotizing enterocolitis (NEC) resulting in short
gut syndrome or other feeding difficulty. Unlike many spe-
cialty NICU follow-up programs focusing on developmental
Maternal and Child Health Journal
outcomes, this program resides within the primary care
medical home. The medial home is located within a large
urban children’s hospital, however care received is strictly
in the outpatient setting as would occur with any primary
care encounter.
Next Steps Program Team‑ Roles
and Responsibilities
Core disciplines within the program include the: PCP, neo-
natologist, dietician, nurse care coordinator, social worker,
referral coordinator, community health worker, program
coordinator, and parent advisor. Table 1 provides a detailed
description of the core disciplines within the program, an
associated screening tools used. Communication between
team members is fostered through weekly case conferences,
detailed chart notes, electronic tasking, and a culture of daily
collaboration. At a typical well-child visit, the patient will
see the PCP along with any combination of the disciplines
depicted in Table 1. Patients and families in need of support
beyond the primary care setting are linked to appropriate
resources. Referrals are tracked and progress is assessed
continually (Table 1).
Transition from the NICU to the Next Steps Program
Continuity of care throughout ongoing care transitions is
paramount to the program model and begins prior to NICU
discharge as depicted in Fig. 1. The social worker and/or
care coordinator routinely attend NICU family and discharge
planning meetings to understand the patient’s medical needs,
and the family’s strengths and potential challenges in transi-
tioning home. Working with the family before discharge fos-
ters a sense of comfort, allows for a familiar face(s) in their
outpatient medical home and also allows staff to mitigate
challenges such as transportation and insurance barriers,
ensuring a successful first appointment. The NSP has estab-
lished a culture of direct “sign-out” between disciplines as
detailed in Fig. 1. This patient “handoff” makes their initial
visit meaningful, productive, and tailored to their specific
medical and social needs. Patients are seen for new patient
appointments within one to three days of NICU discharge
(Fig. 1).
Initial and Ongoing Care in the Next Steps Program
Primary Medical Care
The average visit time with the PCP is 30–60  min, and
thereafter additional team members are consulted in the
same visit encounter. The PCP provides services in accord-
ance with Bright Futures Guidelines including Early Peri-
odic Screening Diagnostic and Treatment, immunizations,
post-partum depression screening, fluoride varnish appli-
cation, and comprehensive medical care planning (Hagan
et al. 2017; Cox et al. 1987). Patients receive acute care
follow-up, developmental screening/referrals (M-CHAT-R,
ASQ, CAT CLAMS), and integrated same-day specialty
care (Robins et al. 2014; Wachtel et al. 1994). The average
patient requires 6–8 medical specialists. The referral advisor
assists families in scheduling appointments and oversees the
feedback loop. The referral advisor works closely with the
social worker to triage barriers to appointment adherence
and transportation. The team takes responsibility for fol-
lowing patients to ensure timely access to care. The practice
has a telephone line for sick children with same-day access
5 days, and two evenings, per week. A physician is on-call
for triage 24 h per day including weekends. Missed appoint-
ments are monitored with proactive outreach to reschedule.
Approximately 65% of appointments are rescheduled, and
the remaining are referred to the social worker for more
intensive follow up.
Transition to Community‑based Primary Care Practice
When medically appropriate, staff will assist families in
transitioning the patient to a pediatrician in their commu-
nity. Staff members work with families to ensure a seamless
transition. They also follow up with families after the first
appointment to ensure a favorable experience. Patients older
than two-and-a-half years who continue to have complex
medical needs may remain in the medical home with all of
its ancillary services by transitioning to the larger primary
care practice for children and youth with special health care
needs (CYSHCN).
Statistical Methods
Data reported for this article were conducted in accordance
with prevailing ethical principles and reviewed by the affili-
ated university’s Institutional Review Board. Diagnostic and
hospital utilization data presented were extracted from the
electronic medical record from 2011 to 2016. In addition to
descriptive analysis, poisson regression method was used to
assess the trend of the hospital utilization rates over time.
The psychosocial needs of patients cared for in the program
were compared with Pennsylvania and US national averages
using one sample proportion z test.
Results
Program Growth
The NSP has seen 549 patients since 2011. By the end of
2016, the NSP had 354 current patients, 194 transitioned
13


Table 1  Next Steps Program team roles and responsibilities

Key personnel Key roles Screening tools utilized

13
Primary care provider Provides all primary care services to patient and family in accordance with Autism screening via the M-CHAT-R
Bright Futures Guidelines and management of medically fragile infants and
children
Manages all syndromes, diagnoses and medical complexity Postpartum depression via Edinburgh Postnatal Depression Scale at 1,2,4 and
6 months of age
Empowers and educates caregiver in home care management Ages and Stages Questionnaires (ASQ)
Obtains sign up from discharging neonatologist on all new patients verbal and Necessary specialized growth charts and clinical practice guidelines in accordance
with discharge summaries with patient needs
Co-management of patients with hospitalists, specialists, and community part-
ners
Participates in family meetings as necessary
Neonatologists Promote continuity between NICU and primary care for patients and families Developmental screening via the CAT​-CLAMS
Systematic, routine screening for developmental delays with validated screeners
Refer to physical, occupational, speech, hearing and vision therapies, as needs
are identified via Early Intervention referrals
Social worker Systematic, routine screening for social, physiological, behavioral, financial, Hospital-based psychosocial assessment tool
food insecurity, and environmental needs with trauma-informed approach (see
Fig. 1)
Link to resources such as: housing, transportation, legal, behavioral health, edu-
cational, employment, WIC, Cribs for Kids, basic needs items, parent support
programs, trauma counseling, financial assistance, immigration or childcare to
optimize social determinants of health
Provides care compliance oversight and liaison between medical home and Child Medical Legal Partnership screener to identify legal needs and link caregivers to
Protection Programs, as needed our on-site lawyer
Ensures patients remain active with health insurance Family planning screener and referrals to free or affordable women’s healthcare
services
Attend and facilitate family meetings, discharge meetings and integrated care as
deemed necessary
Maternal and Child Health Journal
 Table 1  (continued)
Key personnel Key roles Screening tools utilized

Nurse care coordinators Systematic, routine assessment for care coordination needs, medical equipment,
supplies, home nursing or medical daycare services
Coordination of medical equipment for technology dependent patients
Reinforce all NICU discharge teaching and self care management
Draft letters of medical necessity to obtain approval of payers
Maternal and Child Health Journal

Assist with home nursing care plan reconciliation

Daily rounding on patients during hospitalizations to ensure care continuity
upon discharge and effective transitions of care
Facilitate pre-visit huddles with team members to review patients charts and
anticipate medical and social needs
Facilitate co-located visits between PCP and specialists such as dental, urology,
pulmonary and surgery
Coordinate family meetings with team members as social or medical needs are
identified
Draft medical summaries based on all partners and clinicians
Dispense of on-site equipment and medications including nebulizers, asthma
medications, and electric breast pumps
Coordinate prior authorizations for Palivizumab and administer it
Dietitian Assess new patients for appropriate feeding plans and evaluate caregivers’ abil-
ity to follow plan
Closely monitor growth of all patients within the program
Facilitate access to prescribed dietary plan (formula, supplements) to ensure
adherence
Provides feeding and formula mixing instructions at appropriate literacy level,
including mixing demonstrations
Provides breastfeeding support
Collaborate with WIC offices when needed
Program coordinator Manage patient registry, care gaps, and quality improvement initiatives
Manage program research that intends to benefit patients’ outcomes or experi-
ence, and facilitate quality improvement initiatives
Provides oversight to patient education and educational materials
Provides administrative oversight and support to parent lead support group/Fam-
ily Advisory Council
Oversees the Reach Out and Read Program
Coordinates oral health integration and initiatives

13


Table 1  (continued)
Key personnel Key roles Screening tools utilized

13
Community health worker Systematic, routine screening for social, behavioral, and environmental needs Screen for psychosocial risk factors and quality of life via the Health-Related
with trauma informed approach Quality of Life (HRQOL) tool
Establishes a rapport with families known to be overwhelmed, have a dispro-
portionately high level of health care utilization and have a history of medical
noncompliance
Conduct home visits to reach families as needed
Identify root cause of medical nonadherence and try to link families to available
resources
Provides close guidance as needed while empowering caregivers through skill
building and encouragement
Referral coordinator Facilitates communication between program staff and referring NICUs to ensure
smooth program entry for new patients
Orient families to the program in-person or via phone prior to the first appoint-
ment. Provide new patient packet with policies, helpful phone numbers, etc.
Work with family to coordinate all subspecialty appointments recommended by
PCP, both within and outside the institution
Generates appointment calendars for each caregiver
Follow up with family and PCP to ensure subspecialist recommendations are
received
Parent advisor Maintains a presence in the waiting room to provide peer support
Links families to resources within the department and/or community
Holds monthly educational workshops on topics chosen by parents
Advocates for caregivers of CYSHCN in the practice and hospital-wide
Participates in the Family Advisory Council and provides ongoing feedback
Maternal and Child Health Journal
Maternal and Child Health Journal

Fig. 1  Transition from NICU to

the Next Steps Program
Patient Referred
Phase 1: Referral Initiated from NICU

Patient < 32 weeks

gestation

Yes No

Does the patient have a

Phase 2: Program Eligibility complex, chronic condition
Determined per criteria?*
*Eligibility >32 weeks
gestations includes , but not
limited to:
-Genetic syndrome RN care
-Any medical technology coordinator
requirements provide NICU
-Complex neurologic, cardiac, new patient
appointment Yes No
pulmonary or gastrointestinal
disease

Refer to community
pediatrician for
Peer-to-peer sign-out with primary care
attending physicians, social
work, nursing, and dietician
(as needed)

Phase 3: Patient Enolled in Next Steps

Program New patient seen by
multidisciplinary team

*Medical follow up
determined by individual
patient need (e.g. weight gain,
breastfeeding, medical
complexity, parent comfort). Ongoing medical follow up
Frequency indicated by PCP. and care management. *

patients, and 13 deceased patients. Table 2 displays how
the program has grown from 85 new patients in 2011 to
354 active patients in 2016. The team began with caring
for approximately one to two new patients a week, increas-
ing to eight new patients per week. The program, origi-
nally accepted only in-house NICU referrals, now sees
patients from across eight area NICUs, including hospitals
outside of the local county (Table 2).
Medical Complexity of Patients Served
Diagnoses
As depicted in Table 3, almost 80% of patients are born
preterm and have significant co-morbidities as a result of
prematurity. Full term patients in the program widely fit
into four main categories: (1) neurologic impairment such
as holoprosencephaly or hypoxic ischemic encephalopathy

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 Maternal and Child Health Journal

Table 2  Health care utilization in the Next Steps Program (2011–2016)

Year Total patients New Average new Transi- Total well- Total Palivizumab vaccine Inpatient ED visits/yearb
in the program patients/ patients/week tioned child visits follow up (n received/n eligible) admissions/
year ­patientsa visits yearb

2011 85 85 2–3 6 107 136 21 77

2012 179 116 2–6 30 405 650 18 161
2013 264 111 3–7 53 433 584 21 146
2014 293 89 4–8 47 607 609 82/82 20 174
2015 324 99 4–8 31 646 616 118/120 15 128
2016 355 108 3–8 18 746 781 103/104 13 60*

*Statistically significant decrease in emergency department visits from 2015 to 2016 (p < 0.001)
a
 Patients who have minimal to no medical or developmental needs and have had their medical care transitioned to a traditional pediatrician
within their community
b
 Rate per 100 patients in the program

Table 3  Health care characteristics of patients in the Next Steps Program (2016)

Gestational age n (%) Top 4 referral diagnoses for infants > 32 weeks n (%)
gestation

Pre-term
 Extremely (< 28 weeks) 127 (36) Neurologic impairment 53 (48)
 Very (28 to < 32 weeks) 108 (30) Genetic syndrome 27 (24)
 Moderate to Late (32 to < 37 wks) 49 (14) Congenital cardiac condition 16 (14)
Full Term
 (≥ 37 weeks) 70 (20) Gastrointestinal disease 15 (14)
Type of technology n (%)

Patients with history of, or current, medical technology

 Tracheostomy 10 (2)
 Mechanical ventilation 5 (1)
 Oxygen dependent 23 (4)
 Gastrostomy tube 52 (9)
 Apnea monitor 33 (6)
 Colostomy 6 (1)

(HIE) often leading to cerebral palsy; (2) gastrointestinal
disease such as malrotation or short gut syndrome resulting
from NEC; (3) genetic syndromes or; (4) congenital cardiac
conditions (e.g. tetralogy of fallot). Every patient in the pro-
gram is referred for early intervention services. While some
patients are tracked for surveillance special instruction, a
majority of patients are eligible for services such as physi-
cal, occupational, and, or speech/feeding therapy (Table 3).
Palivizumab Vaccine
Due to prematurity and medical diagnoses, a large percent-
age of infants (31% in 2016) qualify for palivizumab—a
vaccine to protect against the respiratory syncytial virus
(RSV) (Brady et al. 2014). From 2014 to 2016, almost all
patients (98–100%) successfully received the vaccine as
outpatients. RSV can cause serious morbidity to medically
vulnerable infants, including prolonged hospitalizations and
even death “Updated Guidance for Palivizumab Prophylaxis
Among Infants and Young Children at Increased Risk of
Hospitalization for Respiratory Syncytial Virus Infection,”
(Brady et al. 2014).
Technology Dependence and Home Nursing Support
Patients are often discharged home on medical technology
as depicted in Table 3. A gastrostomy tube is the most com-
mon form of medical technology dependence (104 patients),
followed by oxygen (48 patients). In 2016, the NSP had ten
patients with tracheostomies, five of them requiring mechan-
ical ventilation. Patients with medical technology also
require a higher level of skilled care at home. In the NSP, 91
patients have home nursing and/or attend medical daycare.

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Maternal and Child Health Journal
These services allow caregivers to work/go to school while
keeping their child at home, or receiving skilled care.
Healthcare Utilization of Patients Served
Patients are hospitalized at a higher frequency than typically
developing children. Patients in the program are among the
top five to ten percent of high utilizers (hospitalizations and
emergency department (ED) visits) among the Medicaid
managed care plans in the practice. Table 2 shows the trend
in hospital utilization for NSP patients. Utilization decreased
from 2014 to 2016, which is a trend the team strives to con-
tinue while maintaining high quality care. Notably, the
decrease in ED visits from 174 visits/100 patients in 2014
to 60 visits/100 patients in 2016 is statistically significant
(p value < 0.001).
Psychosocial Risk Factor Disparities
Figure 2 compares the psychosocial needs of patients and
families in the program to Pennsylvania and US national
averages (PA Deparment of Health 2015; Kids Count 2017;
US Department of Justice Drug Enforcement Administra-
tion 2016 SAMSHA 2012; The Sentencing Project 2017).
On average, patients in the program are exposed to each
of the risk factors at statistically higher proportions than
that of children in Pennsylvania and the US as a whole (p
value < 0.0001) (Fig. 2).
Fig. 2  Psychosocial risk factors 60.0%
50.0%
40.0%
Percent
30.0%
20.0%
10.0%
0.0%
Teenage
Parent
All measures are statistically significant at p<0.0001
Discussion
The NSP is located in the second poorest congressional dis-
trict in the country, and in a region where women are at a
socially higher risk of giving birth to a premature infant and
increased infant mortality, compared to bordering counties.
(U.S. Census Bureau 2014; The March of Dimes Founda-
tion 2016). The psychosocial risk factors are reported at
significantly higher rates than the state and national aver-
age. Patients in the NSP are equally medically complex.
In the US, approximately 11% of infants are born preterm,
comparatively in the NSP almost 80% of patients are born
prematurely (Martin et al. 2015). Other top diagnoses for
referral include significant neurologic impairment, gastro-
intestinal morbidity, genetic syndromes, and complex con-
genital heart conditions. A medical home model, such as the
NSP, is not widely accessed by caregivers of infants who
arguably need such a program the most (Boone et al. 2018).
The NSP responds to the unique needs of this population and
the current void of this model of care.
In 2016, 31% of patients qualified for the palivizumab
vaccine, in stark contrast to a typical primary care prac-
tice, where less than 3% of patients qualify (Wade et al.
2017). Given intensive care management, almost all eligi-
ble patients (98–100%) received palivizumab. In the pres-
ence of poverty, higher rates of psychosocial risk factors,
and significant medical complexity, the NSP has shown
decreased ED utilization over time. Although not statisti-
cally significant, hospital admissions have also trended down
from 2013 to 2016. Decreased hospital utilization translates
to decreased overall healthcare costs. NICU graduates are
Next Steps Program
PA Average
National Average
Involvement Out of Home Illicit Drug Use Mental Health Child with
with Child Placement of Parent Diagnosis of Incarcerated
Protective (Foster, Parent Parent
Services Kinship,
Adoption)
13

a population often utilizing more medical resources. As
healthcare systems continue to shift toward accountable care
organizations, and value-based healthcare this measure is
increasingly critical for financial sustainability, and seen as
a measure of success.
Limitations to our study include a lack of pre-intervention
data. Data presented on ED utilization were limited by avail-
ability of data. Although inferences can be attributed to the
NSP, causality cannot be assumed. In addition, program
replication may be challenging given potential geographic
constraints or lack of affiliation with a larger health sys-
tem. For example, some pediatricians may practice in areas
without a Level-3 NICU and there may be an absence of
neonatologists for patient handoff or partnerships. Practices
without the full complement of resources may try: (1) clus-
tering NICU graduates to certain days of the week fostering
support and comradery among parents; (2) cohort patients in
a registry to facilitate follow-up and manage specific popula-
tion needs; (3) partner with community resources to assist
with access to services; (4) review clinical practice guide-
lines and recommendations for premature infants (Billimoria
and Kamat 2014; VenOsdel et al. 2015).
There are a number of objectives for this program.
Although family experience has been reported favorably in
the larger medical home practice, family satisfaction has not
been assessed for the NSP specifically. Evaluating family
experience and provider experience within the program to
better address the quadruple aim of reduced cost, increased
quality of care improved provider experience, and improved
patient/family satisfaction would be meaningful (Bodenhe-
imer and Sinsky 2014). Tracking medical and quality of
life outcomes as patients transition within the larger special
needs practice, or to a different practice within the commu-
nity would further define potential improvement in the qual-
ity of care and be a strong measurement of program success.
The NSP provides a multidisciplinary model of care tai-
lored to the unique needs of the NICU graduate and their
family. Although patients and families in this program, simi-
lar to other urban metropolitan areas, experience adverse
psychosocial stressors, program enrollment may be associ-
ated with decreased ED utilization and foster immunization
adherence. As this program sits within a larger primary care
medical home serving children and youth with children spe-
cial health care needs, patients have the option to receive
long-term primary care through young adulthood, benefiting
from the many services of a comprehensive family-centered
medical home.
Acknowledgements  We would like to thank the clinical and admin-
istrative staff that has contributed to data collection, both directly and
indirectly. Most importantly, we would like to thank our patients’ fami-
lies and caregivers who have entrusted the NSP team with overseeing
the healthcare delivered to their children.
13
Maternal and Child Health Journal
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