1. TM Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Knowing What You Have: Quality Assurance Activities in EHDI Programs Pam Costa and EHDI Coordinators 2007 EHDI Conference Salt Lake City, UT

2. TM CDC Disclaimer The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention (CDC) and should not be construed to represent any agency determination or policy.

3. TM Participating EHDI Coordinators CA-Hallie Morrow CNMI-Angie Mister CO-Vickie Thomsom FL-Ann Filloon HI-Louella Christensen KY-Michelle King IA-Tammy OHollearn MO-Cathy Harbison NH-Ruth Fox NJ-Kathy Aveni OR-Amy Rosenthal RI-Ellen Amore SD-Terry Disburg VA-Pat Dewey VT-Stacy Jordan WA-Karin Neidt WI-Elizabeth Seeliger WY-Nancy Pajak

4. TM Why Worry about Quality Assurance Accuracy Is the data correct Completeness Are most variables complete for each case Does database represent all eligibles Timeliness Is the necessary data in the database when it is needed for all program purposes

5. TM QA

6. TM Worth Aiming For… It Matters

7. TM Improving Screening Screening Techniques Program standards for inpatient/outpatient screeners (CA) Technical assistance to hospitals (CA) Assign an audiologist to each hospital to provide support (IA) Report screener specific rates to identify those with high error rates (CNMI, WA) Screening Information Return improperly completed forms to hospitals for correction (MO)

8. TM Audiologists Conduct site visits to audiologists (NJ) Develop audiological guidelines Implement audiology bulletin with educational message (CA) NCHAM training Explore licensing to improve quality (CA) If audiologist needs help with pediatric dx. testing, provide expert who goes out and gives Just in time on site technical support (WI)

9. TM Early Intervention Establish EHDI/EI Quality Review Team (RI) Quarterly, look at all children with HL for participation in EI Follow-up with family/primary care provider if needed Have EI update the status (OR) Pursue obtaining parental consent for data to be shared (MO)

10. TM Improving Data Quality Conduct medical record reviews (NJ,MN,CNMI) compare hearing data to chart data Reconcile reports of HL dx in children who passed screening Have hospital check screening results-late onset or error (NJ) Match to vital records Ensure numerator/denominator characteristics the same More data items Edit/valid range checks

11. TM Data Quality cont. Duplicates Have you looked for them Would you recognize them Standardized definitions Does the data make sense Frequencies Do the numbers look like the state; if not, are the differences reasonable Trends-same or different, reasonable?

12. TM Improving Process Establish QA subcommittee as part of Advisory Committee (OR) Develop standards/establish certification for hospitals (CA) Develop Hospital Compliance Manual and rating system based on standards in manual (KY) WI, KY, FL developing a Quality Assurance Toolkit for hospitals; 10 indicators and evaluation tool Use benchmarks to monitor hospital progress and use results to schedule site visits/TA (NH, WI)

13. TM Improving Process cont. Use data/achievement towards benchmarks (too high/too low) to identify areas for improvement (CO) Periodic visits to hospitals to review procedures/provide feedback (FL, CO) Phone contact/outreach to hospital staff (VT) Require hospitals to implement quality assurance procedures to determine and evaluate the effectiveness of the program (NJ) One example is to have hospitals compare the screening machine generated reports to the reports reported to the state (hearing results on birth certificates)

14. TM Improving Process cont. Conduct surveys to assess perception/success of process (CO, RI) Send annual customized report to each hospitals, addressing the hospitals success and/or compliance with screening and reporting (VA, VT) Automate as much as you can thru data system Next actions, letters, flagging kids with no actions At Thanksgiving, send cards to all programs thanking them for their efforts (WY)

15. TM Calling All Babies….

16. TM Ensure All Babies are Screened/Rescreened Periodic reports back to hospitals showing screening status (most all) Named lists (NJ, SD, VT, WA, WY) Aggregate data (FL, IA, VA) Review listings in nursery log books (CNMI) Require hospitals to schedule rescreening appointments prior to hospital discharge (CA Link to vital records/metabolic forms (most all)

17. TM Tracking Lost Babies…

18. TM Reduce Loss/Undocumented Results Policy Develop tracking and monitoring procedure manual showing next steps/responsibilities (CA) Require reporting by audiologists, medical professionals, or others who may have contact with child For providers who do not report results as required, contact them, and if there is no improvement, then send them a letter asking for a corrective action plan, with copy to licensing (CA)

19. TM Reduce Loss/Undocumented cont. Determine extent of loss/undocumentation Conduct data analysis to locate weak/problem areas –Concentrate resources targeting this population (MA) Outreach to submitters Follow-up with diagnostic centers Track what audiologist child referred to; contact to obtain results if not entered (SD)

20. TM Reduce Loss/Undocumented cont. Outreach to families Letters/phone calls to parents when child is missed or hasnt returned (MO, WY) Provide phone support to families of babies that dont pass to help them navigate follow-up process (WI) Try to find new address/information out on child; see if other agencies (such as WIC) will look up child to see if they have new address information (VA)

21. TM Where Else to Look… Casefinding

22. TM Do You Have Everyone Reasonableness of numbers Part C National data estimates Link/use other databases Hospital discharge (cochlear implants) Infectious disease Medicaid Birth defects Part C –Parental consent –Work with another agency which might also have these results that can share with Health Department

23. TM Is It Ready Yet…

24. TM Timeliness What you can affect Checking for duplicates Reports back to hospitals Linking to birth/metabolic other source documents Provide feedback to submitters Quarterly reports include information on timeliness of submission (VA)

25. TM Thank You pcosta@cdc.gov