Infant Abusive Head Trauma: The Impact of Perinatal Parent Education

1. Infant Abusive Head Trauma:The Impact of PerinatalParent Education Mark S. Dias, MD, FAANS, FAAP Departments of Neurosurgery and Pediatrics Pennsylvania State University College of Medicine Penn State Children’s Hospital Hershey, Pennsylvania

2. Co-Investigators New York Pennsylvania Carroll Rottmund, RN, BSN Kelly Cappos, RN, BSN Marie Killian, RN, BSN Ian Paul, MD, FAAP Michele Shaffer, PhD Christopher Hollenbeak, PhD Cindy Christian, MD, FAAP Rachel Berger, MD, FAAP Kim Smith, RN, BSN Kathy deGuehery, RN, BSN Paula Mazur, MD, FAAP Veetai Li, MD Howard Silberstein, MD

3. Preventing AHT • Primary prevention program • Targets parents, especially fathers/father figures • Most likely perpetrators (75%) • Greatest control over who cares for their infant • Provided perinatally when parents are… • A captive audience of the health care system • Focused on the needs of their infant • Soon to be exposed to frustrations of infant crying

4. Perinatal Parent Education • Provide both parents with information about dangers of violent infant shaking, calming an infant, and controlling caregiver frustration/anger • Brochure • Conversation with maternity nurses • Video (Portrait of Promise, St. Paul, MN) • Posters on maternity wards • Ask parents to sign commitment statement (CS) affirming their participation

5. Canada Rochester Buffalo Pennsylvania

6. Baseline Incidence Rates: Comparison with other studies

7. Goals of Intervention I. Educate every parent before child leaves hospital II. Track program compliance • Returned signed Commitment Statements (CS) III. Monitor regional incidence of abusive head injury • Historical controls • Pennsylvania state-wide incidence

8. Program Principles:8 Key Elements • Universal, provided to parents of all children • Consistent time during the perinatal period • Administered by healthcare providers (nurses) • Targets both parents, especially fathers/father figures • Multimedia format, native languages • Commitment statement signed by both parents • Information provided separate from other newborn information and before discharge, not combined with other materials or dropped in diaper bag • Simplicity (KEEP IT SIMPLE, STUPID!)

9. AHT Prevention • Began in WNY December 1998 • 8 counties, 17 hospitals, ~17,000 annual births • > 120K signed and returned CS • Overall program compliance (12/12) XX% • 99% of mothers and 75% of fathers signed CS

10. Measuring Compliance:Nurse Manager Surveys (2005-2011) * Only during initial years of program

11. Measuring Compliance:CS Responses (2006-2012) • 120,516 parents returned CS • 42.1% (50,721) viewed video • 21.6% (26,040) previously viewed video • 18.0% (21,656) did not answer question • 18.3% (22,099) did not view video • Between 64-82% viewed video

12. Parent Telephone Surveys:What was most memorable component?

13. Parent Telephone Surveys7 months post-natal • Without prompting, 28% of mothers remembered receiving information about shaking • With prompting, 98% remember information • Only 16.8% had received any subsequent information (PCP, TV, magazine, mail, other) • 98.8% had a male residing in the home • 99% of them had received program information

14. Results 1999-2011: WNY

15. Results 1999-2012: WNY

16. Results: Finger Lakes Region • Program began January 2001 • Additional 9 counties, ~16,000 live births • Program identical to Western New York • Tracking incidence of abusive head trauma admissions to Golisano Children’s Hospital (University of Rochester)

17. Results 2000-2011: FLR

18. Results 2000-2011: FLR

19. AHT Prevention: Pennsylvania • Began in 31 counties/42 hospitals in central PA (5/02) • Statewide expansion in 67 counties, 118 hospitals (9/03) • Training of nursing staffs completed end of 2006 • Educational components virtually identical to Upstate NY • Brochure developed by PA Department of Health • Other program components and method of delivery identical • Commitment statement similar • Program compliance documented through return of signed CS

20. Compliance: Pennsylvania

21. Compliance: Pennsylvania

22. AHT Prevention: Pennsylvania • Incidence tracked through PA Child Line database • Office of Children Youth and Families • All cases of substantiated abuse involving intracranial injury surveyed prospectively • Active surveillance by three MDs in state • Birth hospital, perpetrator, demographic information sought from hospital records and birth certificates • Two control groups (random subset of births and SIDS)

23. Incidence: Pennsylvania

24. Results 1998-2011: PA

25. Potential Reasons for Discrepancy • Intervention works in UNY but not PA • Independent factor contributing to reduction in UNY but not PA • Upstate NY data are spurious • Too small a sample size • Artificially high historical control rates • Failure to capture all cases during intervention • Not being implemented in same fashion in PA

26. Potential Reasons for Discrepancy • Failure to capture additional cases during historical period in PA • Differences in methods used to capture cases • Enhanced awareness and ability to capture cases during intervention • Economic recession • Huang, JNS Pediatrics, 2011 • Berger, Pediatrics, 2011

27. Where Are We Going Now? • Serial post-natal intervention for 6 months • Text messages sent 3 times weekly • Focused on five domains • Normalcy and cadence of infant crying • Calming a crying infant • Controlling caregiver anger/frustration • Skillfully selecting other caregivers • Dangers of violent infant shaking/AHT

28. Funding Sources • New York • NY State Children and Family Trust Fund • Buffalo Women and Children’s Hospital • Blue Cross/Blue Shield, Independent Health • Abe Abramowski Fund • Matthew Eappen Fund

29. Funding Sources • Pennsylvania • CDC grant #U49-CE001274 • PA Department of Health • Children’s Miracle Network • Penn State University College of Medicine • Penn State Children Youth and Families Consortium • Matthew Eappen Fund

30. Thank You

31. AHT Prevention: PennsylvaniaOffice Based Intervention • 16/30 central PA counties randomized to receive additional office based information at 2, 4, and 6 month pediatric care provider visits • Crying card at each visit • Swaddling 101 brochure • Parents asked to sign response form (CS), returned to study coordinators (track compliance) • Absent parents asked to read crying card at home, and sign and mail response form • Designed to assess feasibility and additional costs

32. AHT Prevention: PennsylvaniaOffice Based Intervention • Cards are designed to improve four key behaviors • Understanding of infant crying as normal • Ability to handle caregiver frustration • Ability to calm the infant, reduce crying • Ability to select better caregivers for their infant