Babies Reaching
Improved Development
and Growth in their
Environment
Home Follow-Up Program
Objectives
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Explore family preparedness for discharge from the
NICU.
Describe barriers to care for families discharged
from the NICU.
Define the mission and role of the BRIDGE program
in daily practice.
Define the target patient population for the BRIDGE
program.
Describe the benefits of a NICU follow-up program.
Benefits of Early Discharge
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Decreasing the period of separation from the
parents may subsequently lessen the
adverse effects on parenting.
Decreased risk of hospital-acquired morbidity
Financial benefits to the hospital
Risk of Early Discharge
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Infants may be placed at risk for increased
mortality and morbidity related to discharge
before physiologic stability is established.
Staff Confidence
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Study by Smith et al. (2009)
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Beth Israel Deaconess Medical Center
800 NICU admissions per year
40 bed unit
Nursing staff did not feel as confident in the
families abilities as the families did with
themselves.
Are families prepared for
discharge?
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Full-term infant studies indicate that despite
discharge teaching, some parents do not feel
adequately prepared.
Among preterm infants, the data is limited.
Are families prepared for
discharge?
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Study by Hamelin, Saydak, & Bramadat
(1997)
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Parental questions go unasked because of the
excitement of discharge.
Parents felt questions were not important enough
to ask the medical staff.
Mothers experienced a renewed crisis when their
infants came home.
Are parents prepared for
discharge?
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Study by Conner and Nelson (1999)
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Majority of parents felt prepared
Parents expressed need for comprehensive
follow-up services
Parents expressed vulnerability post-discharge
because of no home visit follow-ups
NICU Parents Worries at
Discharge
1.
2.
My baby is so fragile! He will be going home
on medical equipment and medicines and
will need specialist visits and more. Is my
baby really ready to come home?
Am I capable of taking care of my baby on
my own?
NICU Parents Worries at
Discharge
3.How do I get through the first night/week
without you there to help?
4.What if I forget the steps for CPR?
5.What local resources can assist me after
discharge?
Perceptions of Vulnerability
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High parental perception of child vulnerability
is associated with high health-care utilization
along with an increased risk of behavior
problems and altered parent-child interaction.
A recent study of preterm infants suggested
that higher perception of child vulnerability is
correlated with worse developmental
outcome at 1 year adjusted age.
Population at highest risk for:
Readmission & Adverse Outcomes
AAP Categories of High Risk
1.
2.
3.
4.
The preterm infant
The infant who requires technological
support
The infant primarily at risk because of family
issues
The infant whose irreversible condition will
result in an early death.
Health Risks for
Premature Infants
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Sudden Infant Death Syndrome (SIDS)
Vision Problems
Hearing Problems
Inguinal Hernias
GERD
Anemia
Rickets
Health Risks for
Premature Infants
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Failure to Thrive (FTT)
Chronic Lung Disease (CLD)
Asthma
Respiratory Synctial Virus (RSV)
Neurobehavioral delays
Developmental delays
Health Risks for
Congenital Heart Disease
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Delays in growth
Possible neurologic abnormalities
Feeding difficulties
Difficulty sleeping
More severe symptoms from common
pediatric problems (ie. RSV)
Santa Clara County
SCC Demographics 2000
3%
26%
44%
24%
White
Hispanic
Asian/PI
African American
Santa Clara County
SCC Demographics 2010
2%
35%
32%
27%
White
Hispanic
Asian/PI
African American
Santa Clara County
Projected SCC Demographics 2050
2%
29%
28%
White
Hispanic
Asian/PI
African American
36%
Latino Immigrants
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Latinos comprise the fastest growing ethnic
group in the United States, accounting for
15% of the current population.
Limited english proficiency (LEP)
Uninsured & earn incomes below federal
poverty level
Latino Immigrants
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Birth rate is highest among all ethnicities,
nearly 1/4 of Latino women receive limited or
no prenatal care.
Birth rate by race/ethnicity
Birth Rate per 1000
people
Santa Clara County
13.0
Latina / Hispanic
18.0
White
8.5
African American
10.2
Asian / Pacific Islander
5.7
Race / Ethnicity
SCVMC NICU
Demographics 2011
Admissions
Total deliveries: 4227
Total Admissions: 424
Inborn admissions:358
Outside Admits: 66
Acute Transports: 41
SCVMC NICU
Demographics 2011
Infant Population
Latino Families with LEP
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Study by Miquel-Verges, Donohue, & Boss
(2011)
Explored parents’ experience of the transition
from NICUs to community pediatric care.
Participants
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25 beds, no subspecialty service
45 beds, regional referral center
Latino Families with LEP
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Design
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Initial parent interview 48hrs prior to NICU
discharge
2nd interview 1 month after discharge
Latino Families with LEP
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Results
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47% of mothers reported receiving less than 1hr
of teaching
86% responded that they were “satisfied” or “very
satisfied” with d/c teaching
73% reported understanding “most of what
happened in the NICU”
27% reported understanding “some of what
happened”
Latino Families with LEP
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Results
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47% felt “very prepared” to take their infant home
49% felt “somewhat prepared”
53% worried about their infant’s future medical
status
81% worried about future
developmental problems
Medical problems and
healthcare utilization after D/C
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62% of infants had been seen by the PCP once or
twice
27% reported 3 or 4 visits
9% reported >4 visits
3% could not remember
1/3 went to the ED, but only 6%
required hospitalization
24% had a nurse visit their home
Medical problems and
healthcare utilization after D/C
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Although most mothers received information
about community resources prior to d/c, the
majority could only name WIC.
55% were eligible for early developmental
intervention programs, only 32% of mothers
were aware of the program.
Latino Families with LEP
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As many as 1/3 of Latino children experience
difficulties getting specialized medical care.
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Barriers to adequate primary care likely also impact
subspecialty follow-up.
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Misuse of Emergency Room.
Latino Families with LEP
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NICUs must support immigrant families with
LEP during their infants hospitalization,
throughout the discharge process, and the
transition to community pediatric care.
Pediatric care post discharge
Well Child Checks
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AAP recommends a minimum of 6 WCC
visits in the first year.
Term newborns without morbidities can
expect to have an average of 12 visits the
first year.
Pediatric care post discharge
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Study by Wade et al. (2008)
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Cohort 23-32 weeks gestation
Infants had a mean of 20 clinic visits per year
The top 10th percentile included infants who had
more than 33 visits
The extra visits per year for preterm infants were
attributed to non-well pediatric and specialty care.
Conclusions
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Families of infants who have more than 30 visits per
year to a medical center would benefit from a
coordinated schedule of visits and a clear
mechanism of communication between and among
physicians and the family.
For some infants, home visits and follow-up phone
communication may serve to support and educate
parents in the care of their infants while also
reducing frequency of visits and parental anxiety.
Babies Reaching
Improved Development
and Growth in their
Environment
Home Follow-Up Program
Launched April 4, 2011
Mission Statement
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To provide safe, cost effective, quality
preventative home care to medically fragile
NICU graduates while bridging the gap
between the NICU, the patient’s home, and
ambulatory care pediatrics.
BRIDGE
NICU
Pediatrics
Family
Specialty
PHNs
HRIF
Soc Serv
Goals
1.To facilitate the transition from the NICU to
the home environment for medically fragile
infants with complex medical issues.
2.Reduce parental anxiety during the transition
home.
3.Minimize unnecessary re-hospitalizations,
urgent care and emergency room visits.
Comprehensive Perinatal
Services Program (CPSP)
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Women with Medi-Cal receive comprehensive
services including prenatal care, health
education, nutrition services, and psychosocial
support for up to 60 days after delivery of their
infants.
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Some NICU patients are discharged home after
60 days of life, thus making them ineligible for a
CPSP visit.
Challenges
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Public Health Department has experienced significant
budget cuts.
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NICU graduates are missing critical follow-up
appointments.
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NICU graduates are being seen in urgent care and the
emergency room for conditions that could be treated in
the home by a Nurse Practitioner.
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A great communication gap exists between outpatient
and inpatient hospital systems.
Federally Qualified Health
Center (FQHC) Visits
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Reimbursed by State and Federal
Government at $350 per home visit.
No limit on the number of FQHC home
visits.
BRIDGE qualifies as FQHC visits.
Eligibility Criteria for BRIDGE
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Premature infants < 32 weeks gestation
Birth Weight < 1500 grams at birth
Term infants diagnosed with Hypoxic
Ischemic Encephalopathy (HIE)
Infants with Congenital Heart Disease (CHD)
Complex surgical infants
Expanded Eligibility Criteria
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Premature infants < 36 weeks gestation
NICU stay > 7 days
Multiple gestation
Chromosomal or congenital anomalies
Infants of teen parents
Infants going into foster care
Drug exposed infants
Before the Visit
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Attend weekly clinical and multi-disciplinary team
rounds.
Compile comprehensive medical history: interim
summaries, discharge summaries, lab results,
diagnostic imaging.
Meet guardian before discharge.
Acquire contact information.
Schedule visit: Goal is to have first visit 1-2
weeks post-discharge.
During the Visit
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Medical History since NICU discharge
Review of Systems
Comprehensive Physical Exam
Anticipatory Guidance
Health Care Maintenance
Family Centered Care
Each family must be treated
individually, with care customized
to their unique situation.
After the Visit
Charting
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Electronic Medical Record
Generate Detailed Medical Note
Note shared with multi-disciplinary team
Roles & Inter-Relationships
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Maintain and sustain open communication
between all of the healthcare providers in the
patients medical home.
Charge Slips
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Generate charge slip for every visit.
Billing based on ICD-9 codes
Charges based on problems addressed
during the visit.
Common Problems
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Issues Addressed:
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Medications
Immunizations
Feeding
Medical Equipment
Car Seat Safety
Patient Appointments
Need for educational reinforcement
Empowerment
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Adequate parental education can reduce the
risk of readmission by ensuring that:
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Parents seek medical attention appropriately.
Parents administer medications and other
therapies correctly.
Parents show confidence in the home
management of non-acute medical problems.
Parent Evaluations
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“What a wonderful service to families-very
valuable. I’m an ex-NICU nurse & the visit
was so helpful & reassuring even though I’ve
had experience with medically fragile babies.”
“I have a lot of weight lifted off my shoulders
now.”
“I’m a first-time mom & I found this very
helpful, all of my questions were answered.”
Future Plans
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Expansion to MICC in July 2013
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Teen mothers
Mothers with limited prenatal care prior to delivery
Families with social issues
Patients with chromosomal anomalies
Patients with anatomical anomalies
Publish data on: “Effectiveness of the NICU
BRIDGE Home Follow-up Program”
El Fin!
An infant’s transition from the
NICU to home is poorly
understood. However, it
represents a critical step in infant
growth and development.
References
American Academy of Pediatrics, Committee on Fetus and Number. (1998). AAP position statement. Hospital
discharge of high-risk neonate-Proposed guidelines. Pediatrics, 102: 411-417.
Conner, JM, and Nelson, EC. (1999). Neonatal intensive care: Satisfaction measured from a parent’s perspective.
Pediatrics, 103(supplement E): 336-349.
Discenza, D. (2009). NICU parents’ top ten worries at discharge. Neonatal Network, 28: 202-203.
Hamelin, K, Saydak, MI, and Bramadat, IA. (1997). Interviewing mothers of high-risk infants. What are their support
needs? The Canadian Nurse, 93:35-38.
Miquel-Verges, F, Donohue, PK, and Boss, RD. (2010). Discharge of infants from NICU to latino families with limited
english proficiency. Journal of Immigrant Minority Health, 13:309-314.
Santa Clara County Public Health. Quick Facts: Status of Latino/Hispanic Health, 2012. Maternal, Infant, Child Health.
Data acquired online Oct 12, 2012 at http://www.sccgov.org/sites/sccphd/enus/Partners/Data/Documents/Latino%20Health%202012/LHA_MaternalInfantChildHealth_oct2012.pdf
References
Santa Clara County Public Health. Quick Facts: Status of Latino/Hispanic Health, 2012. Population growth over time
and projected population size by race/ethnicity. Data acquired online Oct 12, 2012 at
http://www.sccgov.org/sites/sccphd/en-us/Partners/Data/Documents/Latino%20Health%202012/LHA_Demographics_oct2012.pdf
Smith, VC, Young, S, Pursley, DM, McCormick, MC, and Zupancic, JAF. (2009). Are families prepared for discharge
from the NICU? Journal of Perinatology, 29: 623-629.
Sneath, N. (2009). Discharge teaching in the NICU: Are the parents prepared? An integrative review of parents’
perceptions. Neonatal Network, 28: 237-246.
Wade, KC, Lorch, SA, Bakewell-Sachs, S, Medoff-Cooper, B, Silber, JH, and Escobar, GJ. (2008). Pediatric care for
preterm infants after NICU discharge: High number of office visits and prescription medications. Journal of
Perinatology, 28: 696-701.
Questions
Comments
Foster Families
Foster Care
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Shortage of qualified foster families
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Increases in employment for women
Increases in the # of single-parent families
Complexity of problems experienced by foster
children
Increase in the number of kinship caregivers.
The effect of shortages of
good foster families
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Children generally have:
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An increased incidence of chronic medical
conditions
Lack of general health care
Lack of developmental and mental health
monitoring
As many as 75% of young children in foster care
need further developmental evaluation or have a
developmental delay
References
Clyman, R, Harden, B, and Little, C. (2002). Assessment, intervention and research with infants in out-of home
placement. Infant Mental Health Journal, 23: 435-453.
Edelstein, S, Burge, D, and Waterman, J. (2001). Helping foster parents cope with separation, loss, and grief. Child
Welfare, 80: 5-25.
Gleeson, JP, O’Donnell, J, and Bonecutter, FJ. (1997). Understanding the complexity of practice in kinship foste care.
Child Welfare, 76: 801-826.
Hegar, RL, and Scannapicco, M. (1999). Kinship foster care: Policy, practice, and research. University of Nebraska
Press: Lincoln, Nebraska.
Marcellus, L. (2004). Foster families who care for infants with perinatal drug exposure: Support during the transition
from NICU to home.
Mauro, L. (1999). Child placement: Policies and issues. In Young Children and Foster Care: A Guide for Professionals.
Silver, J, Amster, B, and Haecker, T, eds. Brooks: New York, 261-278.
U.S. Department of Health and Human Services, Administration for Children and Families, 2000. The AFCARS Report.
Administration on Children, Youth and Families Children’s Bureau. Referenced in article by Marcellus, L. (2004).
Foster Family Panel
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Alan Graham
Sandi Orlando
Jeni Strouss
Judi VanElderen
Questions
Comments
Prompted Questions
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What made you decide to become a foster parent?
What are some of the challenges of being a foster parent to a
medically fragile child?
How easy or difficult is it to navigate the healthcare system?
If your child sees multiple specialist, do you feel that they are
knowledgeable about your child’s condition before your visit?
Is there anything that you would change about your NICU stay?
What did you find most helpful during your NICU stay?
What are the benefits of the BRIDGE program?
Would you change anything about the BRIDGE program?