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Pennsylvania Department of Health Out-of-Hospital Birth Newborn Hearing Screening Initiative National EHDI Conference Washington, D.C. February 2 -3, 2006 Arthur A. Florio, DOH EHDI Program Administrator Patti Matlock, R.N., DOH Nursing Services Consultant Lynn Shay, R.N., BSHS, CPM Presenter Disclosure Information In the past 12 months, we have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in our presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA or will be discussing unapproved or “off-label” uses of pharmaceuticals or devices. Pennsylvania Facts Population 12,406,292 44,817 square miles 67 Counties and 2,567 municipalities 48 of 67 counties are rural 1/3 of the population lives in a rural area Pennsylvania’s Early Hearing Detection & Intervention Program 1999 – began demonstration program in 26 birthing hospitals IHEARR Act passed in November of 2001 Statewide program implemented July 1, 2002 Universal EHDI in all 125 birthing hospitals ~ 142,000 hospital births per year Approx. 3,400 out-of-hospital births per year 2004 Hospital Hearing Screenings 160,000 141,465 Total Births 138,750 137,734 140,000 Newborns Screened Initially 120,000 100,000 Newborns Completing Screening 80,000 60,000 40,000 20,000 0 1,470 Newborn Not Passing Screening Why undertake a special effort to screen Out-of-Hospital Births? IHEARR Act specifically mentions the need to screen out-of-hospital births within 30 days. HRSA UNHSI grant has a requirement to assure broadest possible representation of culturally distinct groups in programs sponsored by MCHB. Pennsylvania has historically concentrated cultural communities where out-of-hospital birthing is preferred. These communities have continued to grow. Out-of-Hospital (OOH) Births Pennsylvania had a total of 3,390 out-ofhospital births in 2003. 1,066 OOH births (32%) occurred at Freestanding Birthing Centers (FBCs); 120 FBC births were to out-of-state residents. 2,324 OOH births (68%) occurred in residences, midwives’ homes or other locations (the majority were home births). Geographic Concentrations 5 of the 15 FBCs accounted for 64% of the 1066 births that took place in FBCs during 2003. 5 counties accounted for 62% of all OOH births in the residence, physician’s office & other location category (i.e., places other than FBCs). 2003 OOH Births – Top 20 Counties of Occurrence (all types included) Erie Warren 112 McKean Bradford Tioga Potter Susquehanna Wayne Crawford 43 Forest Mercer 97 Wyoming Venango Cameron Elk Lackawanna Sullivan Pike Lycoming Clinton Luzerne Clarion Jefferson Lawrence Columbia Clearfield Butler Centre 33 Armstrong Beaver Mifflin 104 Indiana 120 Allegheny 135 Cambria Carbon Snyder Northampton Schuylkill Lehigh Dauphin Blair Perry Westmoreland Monroe Union 211 Lebanon 38 Huntingdon Berks 215 Bucks Washington Cumberland 86 Fayette Somerset Lancaster 1047 Bedford Fulton Greene 1,000 + 50 – 100 100 - 200 40 - 80 Franklin 99 Adams York 38 Philadelphia 88 Chester 124 Delaware 78 2003 OOH Births – Areas of Concentration Red – Areas with concentrated home births (townships/boroughs with at least 5 and as many as 104 home births – residence of mother) Colored Dots with surrounding shading – Locations of FBCs and the twps./boroughs where mothers who gave birth in those FBCs reside. MIDWIVES DOING OOH BIRTHS Certified Nurse Midwife (CNM) Certified Professional Midwife (CPM) Direct Entry Midwife (DEM) Traditional Midwife Some RNs and midwife apprentices also do newborn hearing screening for OOH births. Overcoming Barriers in Getting OOH Birth Hearing Screening Started . . . Lack of interest among midwives Midwives not convinced of its importance – viewed hearing screening as an additional unnecessary procedure Patients not interested Hospitals hesitant to allow hands-on in-service training for midwives doing OOH births Getting Started . . . Contact midwives in the counties with the largest concentrations of OOH births Contact DOH district office community health nurses Finding midwives interested in performing newborn hearing screening FBCs are a good venue for hands-on training Establishing OOH Birth Screening Networks . . . Traveling Midwife Networks Freestanding Birthing Facilities How Machines are Purchased Advisory Committee helped formulate equipment specifications Bid Procurement -- bid specification is issued and vendors submit bids The lowest bid that meets all requirements of the bid specification gets the sale Bid Specification Highlights . . . Must be Portable Auditory Brainstem Response (ABR) Battery-powered (5-hour operating capability on charge) Pass/Not-pass result indication Consumables for 500 screenings/unit 3-year service agreement & warranty Vendor Training Communication is Important Mailing reports and information Faxes and e-mail Telephones phones and cell CURRENT PLACEMENT OF PORTABLE ABR SCREENING UNITS Pennsylvania’s EHDI program has purchased 15 portable ABR units The units are currently deployed at the above locations Upcoming prospective placement at Pittsburgh FBC Another bid purchase is in process for 5 additional units Preparing for Hearing Screening Quiet environment Make sure infant is tired and fed Identify and prepare sensor sites Connect Sensors Fit ear-tip on the probe Prepare the machine View results and record results Maintaining the Networks 15 portable ABR screening units in use 6 traveling midwives share 3 machines 12 units are at FBCs Maintaining equipment - 5 machines need yearly replacement cables - knowledge of warranties Budgeting for and ordering supplies Reports Division of Newborn Disease Prevention and Identification PO Box #90, Harrisburg PA, 17108-0090 Submitter Keep Top Copy 1234567 Phone: (717) 783-8143 TTY: (717) 783-6514 Out of Hospital Births This form is for out of hospital births and includes Hearing Screening DRAW DATE TIME FIRST AM PM LOCATION OF BIRTH: HOME DRAWN BY ____________________________ MOTHER’S SOCIAL SECURITY NUMBER HEARING SCREENING: (OUT OF HOSPITAL BIRTHS ONLY) PHONE NUMBER MOTHER’S LAST NAME FIRST ADDRESS CITY, STATE, ZIP PHONE (MOTHER) L-XXXXXXX OTHER BIRTHING CENTER BIRTHTIME BABY’S MED. REC. NO. BABY’S RACE AM SEX WHITE ASIAN F PM BLACK AM. IND. BIRTH GESTATION BIRTHWEIGHT PAC. IS. OTHER SINGLE OTHER ____ HISPANIC ? (WEEKS) (GRAMS) A B C YES NO TRANSFUSED? SPECIMEN PREV. CARD # SM. VOL INITIAL MATERNAL HEPATITIS B STATUS EXCHANGE REPEAT DATE __________ Hbs Ag POS. NEG. ? FORM SUBMITTED BY MIDWIFE CHECK HERE IF BABY IF BABY IS LESS THAN 24 HRS. OLD M BIRTHDATE NAME OF SCREENER: ______________________DATE: __________ BABY’S PHYSICIAN R. Ear Pass ____ Refer ____ Not Screened ____ Refused ____ L. Ear Pass ____ Refer ____ Passed but High Risk Factor ____ MOTHER’S MEDICAL ASSISTANCE # LAST NAME ADDRESS IF OTHER THAN BIRTH FACILITY FIRST NAME OOH Birth Filter Paper 1234567 BABY’S LAST NAME S & S 903 LOT # W-011 (Rev. 12/02) Pennsylvania Department of Health Success of Program Diagnosed 2 newborn infants with hearing loss Both infants have amplification Awareness among the Lancaster County about hearing screening and the outcome More interest among the midwives in screening Challenges Fluctuating birthing volumes Generating interest among clientele Equipment recalls Cooperation among midwives sharing screening units Submission of data and referrals Goals for 2006 Purchase 5 ABR hearing machines Screen 50-60% of OOH births Provide educational updates for midwives Initiate feedback newsletter for midwifes Serving special sub-groups of the population in Pennsylvania The Plain People Agrarian communities Rural residents Complementary healthcare seekers Barriers to screening in subgroups The Old Order Amish and Mennonites Cost of test and subsequent treatment Transportation and access The Old Order Amish and Mennonites Educational level Reliance on non-allopathic healthcare Community belief systems Routine preventive care devalued Technology Avoid being unique Advice from grandparents Government aid Other Plain Groups, Farmers, Rural Dwellers and Complementary healthcare groups Cost Transportation Ease of accessibility Distrust of government programs Distrust of allopathic healthcare/technology Removing the Barriers Personal relationship with the provider Patient education Free testing Portable process Incorporation into routine care Viewing hearing screening as a standard of care Relating early treatment to adult productivity Cultural Competence: The chameleon effect Home visits “Hitching posts” Personal relationship The teachable moment Informing multiple generations Net results for outreach screening services: Decreasing disparity in healthcare services to population sub-groups (Healthy People 2010 goal) Increased screening to children at risk Increased awareness of importance of prevention, screening and early intervention among often marginalized groups Screening and Intervention Linked Screening followed by intervention in all subgroups Intervention amenable Summary and Lessons Learned Research is Key Identify and Overcome Barriers Recognize Cultural Diversities Program Requires Investment of Staff Time and Effort Develop Relationships Based on Trust Communications