Babies Reaching Improved Development and Growth in their Environment

1
Babies Reaching Improved Development and Growth
in their Environment

• Home Follow-Up Program

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Objectives

• 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.

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Benefits of Early Discharge

• 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

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Risk of Early Discharge

• Infants may be placed at risk for increased
  mortality and morbidity related to discharge
  before physiologic stability is established.

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Staff Confidence

• Study by Smith et al. (2009)
• 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.

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Are families prepared for discharge?

• Full-term infant studies indicate that despite
  discharge teaching, some parents do not feel
  adequately prepared.
• Among preterm infants, the data is limited.

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Are families prepared for discharge?

• Study by Hamelin, Saydak, Bramadat (1997)
• 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.

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Are parents prepared for discharge?

• Study by Conner and Nelson (1999)
• 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

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NICU Parents Worries at Discharge

1. 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?
2. Am I capable of taking care of my baby on my own?

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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?

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Perceptions of Vulnerability

• 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.

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Population at highest risk for Readmission
Adverse Outcomes
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AAP Categories of High Risk

1. The preterm infant
2. The infant who requires technological support
3. The infant primarily at risk because of family
   issues
4. The infant whose irreversible condition will
   result in an early death.

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Health Risks for Premature Infants

• Sudden Infant Death Syndrome (SIDS)
• Vision Problems
• Hearing Problems
• Inguinal Hernias
• GERD
• Anemia
• Rickets

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Health Risks for Premature Infants

• Failure to Thrive (FTT)
• Chronic Lung Disease (CLD)
• Asthma
• Respiratory Synctial Virus (RSV)
• Neurobehavioral delays
• Developmental delays

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Health Risks for Congenital Heart Disease

• Delays in growth
• Possible neurologic abnormalities
• Feeding difficulties
• Difficulty sleeping
• More severe symptoms from common pediatric
  problems (ie. RSV)

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Santa Clara County
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Santa Clara County
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Santa Clara County
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Latino Immigrants

• 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

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Latino Immigrants

• Birth rate is highest among all ethnicities,
  nearly 1/4 of Latino women receive limited or no
  prenatal care.

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Birth rate by race/ethnicity
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SCVMC NICU Demographics 2011Admissions
Total deliveries 4227 Total Admissions
424 Inborn admissions358 Outside Admits
66 Acute Transports 41
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SCVMC NICU Demographics 2011Infant Population
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Latino Families with LEP

• Study by Miquel-Verges, Donohue, Boss (2011)
• Explored parents experience of the transition
  from NICUs to community pediatric care.
• Participants
• 25 beds, no subspecialty service
• 45 beds, regional referral center

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Latino Families with LEP

• Design
• Initial parent interview 48hrs prior to NICU
  discharge
• 2nd interview 1 month after discharge

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Latino Families with LEP

• Results
• 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

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Latino Families with LEP

• Results
• 47 felt very prepared to take their infant
  home
• 49 felt somewhat prepared
• 53 worried about their infants future medical
  status
• 81 worried about future
• developmental problems

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Medical problems and healthcare utilization
after D/C

• 62 of infants had been seen by the PCP once or
  twice
• 27 reported 3 or 4 visits
• 9 reported gt4 visits
• 3 could not remember
• 1/3 went to the ED, but only 6
• required hospitalization
• 24 had a nurse visit their home

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Medical problems and healthcare utilization after
D/C

• 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.

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Latino Families with LEP

• As many as 1/3 of Latino children experience
  difficulties getting specialized medical care.
• Barriers to adequate primary care likely also
  impact subspecialty follow-up.
• Misuse of Emergency Room.

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Latino Families with LEP

• NICUs must support immigrant families with LEP
  during their infants hospitalization, throughout
  the discharge process, and the transition to
  community pediatric care.

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Pediatric care post discharge
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Well Child Checks

• 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.

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Pediatric care post discharge

• Study by Wade et al. (2008)
• 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.

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Conclusions

• 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.

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Babies Reaching Improved Development and Growth
in their Environment

• Home Follow-Up Program
• Launched April 4, 2011

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Mission Statement

• To provide safe, cost effective, quality
  preventative home care to medically fragile NICU
  graduates while bridging the gap between the
  NICU, the patients home, and ambulatory care
  pediatrics.

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BRIDGE
NICU
Pediatrics
Family
Specialty
PHNs
HRIF
Soc Serv
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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.

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Comprehensive Perinatal Services Program (CPSP)

• 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. 
• Some NICU patients are discharged home after 60
  days of life, thus making them ineligible for a
  CPSP visit.

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Challenges

• Public Health Department has experienced
  significant budget cuts.
• NICU graduates are missing critical follow-up
  appointments.
• 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.
• A great communication gap exists between
  outpatient and inpatient hospital systems.

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Federally Qualified Health Center (FQHC) Visits

• 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.

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Eligibility Criteria for BRIDGE

• Premature infants lt 32 weeks gestation
• Birth Weight lt 1500 grams at birth
• Term infants diagnosed with Hypoxic Ischemic
  Encephalopathy (HIE)
• Infants with Congenital Heart Disease (CHD)
• Complex surgical infants

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Expanded Eligibility Criteria

• Premature infants lt 36 weeks gestation
• NICU stay gt 7 days
• Multiple gestation
• Chromosomal or congenital anomalies
• Infants of teen parents
• Infants going into foster care
• Drug exposed infants

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Before the Visit

• 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.

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During the Visit

• Medical History since NICU discharge
• Review of Systems
• Comprehensive Physical Exam
• Anticipatory Guidance
• Health Care Maintenance

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Family Centered Care

• Each family must be treated individually, with
  care customized to their unique situation.

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After the Visit
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Charting

• Electronic Medical Record
• Generate Detailed Medical Note
• Note shared with multi-disciplinary team

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Roles Inter-Relationships

• Maintain and sustain open communication between
  all of the healthcare providers in the patients
  medical home.

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Charge Slips

• Generate charge slip for every visit.
• Billing based on ICD-9 codes
• Charges based on problems addressed during the
  visit.

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Common Problems

• Issues Addressed
• Medications
• Immunizations
• Feeding
• Medical Equipment
• Car Seat Safety
• Patient Appointments
• Need for educational reinforcement

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Empowerment

• Adequate parental education can reduce the risk
  of readmission by ensuring that
• Parents seek medical attention appropriately.
• Parents administer medications and other
  therapies correctly.
• Parents show confidence in the home management of
  non-acute medical problems.

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Parent Evaluations

• What a wonderful service to families-very
  valuable. Im an ex-NICU nurse the visit was so
  helpful reassuring even though Ive had
  experience with medically fragile babies.
• I have a lot of weight lifted off my shoulders
  now.
• Im a first-time mom I found this very
  helpful, all of my questions were answered.

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Future Plans

• Expansion to MICC in July 2013
• 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

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El Fin!

• An infants transition from the NICU to home is
  poorly understood. However, it represents a
  critical step in infant growth and development.

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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
  parents 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,
  9335-38.
• 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, 13309-314.
• 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/en-
  us/Partners/Data/Documents/Latino20Health202012/
  LHA_MaternalInfantChildHealth_oct2012.pdf

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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/Latino20Hea
  lth202012/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.

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Questions

• Comments

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Foster Families
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Foster Care

• Shortage of qualified foster families
• 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.

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The effect of shortages of good foster families

• Children generally have
• 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

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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, ODonnell, 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 Childrens Bureau. Referenced
  in article by Marcellus, L. (2004).

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Foster Family Panel

• Alan Graham
• Sandi Orlando
• Jeni Strouss
• Judi VanElderen

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Questions

• Comments

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Prompted Questions

• 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
  childs 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?