B abies R eaching I mproved D evelopment and G rowth in their E nvironment

1. BabiesReachingImprovedDevelopmentandGrowthin theirEnvironment Home Follow-Up Program

2. 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.

3. 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

4. Risk of Early Discharge Infants may be placed at risk for increased mortality and morbidity related to discharge before physiologic stability is established.

5. 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.

6. 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.

7. 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.

8. 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

9. NICU Parents Worries at Discharge 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?

10. 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?

11. 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.

12. Population at highest risk for: Readmission & Adverse Outcomes

13. AAP Categories of High Risk 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.

14. Health Risks for Premature Infants Sudden Infant Death Syndrome (SIDS) Vision Problems Hearing Problems Inguinal Hernias GERD Anemia Rickets

15. Health Risks for Premature Infants Failure to Thrive (FTT) Chronic Lung Disease (CLD) Asthma Respiratory Synctial Virus (RSV) Neurobehavioral delays Developmental delays

16. 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)

17. Santa Clara County 3% 26% 44% 24%

18. Santa Clara County 2% 35% 32% 27%

19. Santa Clara County 2% 29% 28% 36%

20. 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

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

22. Birth rate by race/ethnicity

23. SCVMC NICU Demographics 2011Admissions Total deliveries: 4227 Total Admissions: 424 Inborn admissions:358 Outside Admits: 66 Acute Transports: 41

24. SCVMC NICU Demographics 2011Infant Population

25. 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

26. Latino Families with LEP Design Initial parent interview 48hrs prior to NICU discharge 2nd interview 1 month after discharge

27. 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”

28. Latino Families with LEP Results 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

29. 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 >4 visits 3% could not remember 1/3 went to the ED, but only 6% required hospitalization 24% had a nurse visit their home

30. 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.

31. 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.

32. 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.

33. Pediatric care post discharge

34. 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.

37. 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.

38. 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.

39. BabiesReachingImprovedDevelopmentandGrowthin theirEnvironment Home Follow-Up Program Launched April 4, 2011

40. Mission Statement 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.

41. BRIDGE NICU Pediatrics Family Specialty PHNs HRIF Soc Serv

42. 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.

43. 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.

44. 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.

45. 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.

46. Eligibility Criteria for BRIDGE 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

47. Expanded Eligibility Criteria 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

48. 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.

49. During the Visit • Medical History since NICU discharge • Review of Systems • Comprehensive Physical Exam • Anticipatory Guidance • Health Care Maintenance

50. Family Centered Care Each family must be treated individually, with care customized to their unique situation.