Guam EHDI 3rd Advisory Meeting Phase III, Year Two Wednesday, May 21, 2010 Westin Guam Resort & Spa Members Present Members Absent Mr. Edmund Cruz Dr. Leann Barcinas Dr. Robert Leon Guerrero Ms. Missy Cruz Mrs. Bridgette Flores-Lobo Mr. John Cruz Mrs. Avelina Opena (Bing) Mr. Joseph Mendiola (Joe) Mrs. Joyce Flores Dr. Maria Andrea Alano Mrs. Maria Victoria Guiao (Marvic) Ms. Magarita Gay (Off-island) Mrs. Pat Mantanona Dr. Dennis Triolo Mrs. Joyce Flores Mrs. Kim Aeillo (Off-island) Ms. Ruth Sabangan Ms. Lina Leon Guerrero Mr. Sean Lizama Ms. Marie Merfalen Ms. Francine Isezaki Ms. Glenda Leon Guerrero (Off-island) Mr. David Zieber represented by Bryan San Nicolas Mrs. Ann Marie Cruz (Off-island) Mr. Pete Camacho Mrs. Lorrah Santos Ms. Sherry Cruz Mrs. Christine San Nicolas Guam EHDI Staff Members Present Mrs. Elaine Eclavea Dr. Velma Sablan Mrs. Vicky Ritter Mr. Joseph J. Mendiola (JJ) Ms. Ruth Leon Guerrero Ms. Jacia Shimizu Mr. Eric Pegarido Meeting Notes Meeting was called to order by Ms. Joyce Flores, Co-Chairperson, at 11:50 am. 1. Mrs. Flores requested for the members and staff to introduce themselves and review the minutes of the Advisory Committee meeting held on February 24, 2010, although there are not enough members present for a quorum. 2. Mrs. Flores turned the floor over to Mrs. Elaine Eclavea, Guam EHDI Coordinator, because the Advisory Chairperson, Ms. Margarita Gay, Maternal Child Health (MCH) Coordinator, Department of Public Health & Social Services (DPHSS) was off-island and not present. 3. Mrs. Eclavea began with the outcome of the meeting: to give the members updated information on the Guam Early Hearing Detection and Intervention’s (Guam EHDI) performance for the last three months, and information on the new grant components and receive input on improvement strategies. 4. Members were shown the draft video “The Parent Story”, featuring Mrs. Christine San Nicolas talking about her experiences as a parent of a child with hearing loss. 5. Mrs. Eclavea reviewed Goal One (Part 1): Maintain hearing screening rates at 95% benchmark or better for all infants born on Guam. Infants will be screened for hearing loss before 1 month of age, preferably before discharge. Data on infants that fail initial screening (FIS) from December 2009 through March 2010 was reviewed. Guam Memorial Hospital Authority (GMHA) screened an average of 98% of their newborns, and had an average of 11% FIS. Sagua Managu Birthing Center (SMBC) screened an average of 96% of their newborns, and had an average of 10% FIS. Training for the AABR screening took place on March 17th & 18th for GMHA & SMBC. The 2-step screening strategy is being implemented at the GMH-OB Ward and SMBC. Preliminary data from Guam ChildLink show that at GMH-OB Ward, only 5 babies were referred for audiological evaluation in March and April. At SMBC, only one infant was referred in March and April. 6. Quality Improvement Process: From January to June 2009, 22 babies were listed in the Birth Log but were not found in ChildLink. This is a nation-wide problem. The Family Supporters will attempt to contact the parents of these “missed” babies and complete a referral to Guam Early Intervention System for hearing screening to be completed. 7. Mrs. Eclavea turned the floor over to Dr. Velma Sablan. Dr. Sablan discussed the evaluation report of the National Association for Public Health Statistics and Information Systems (NAPHSIS) team regarding Guam’s electronic birth certificate (EBC) system. The NAPHSIS team led by Leesa Shemtov recommended the “STEVE-ER” method for Guam EHDI to link with Public Health’s Vital Records department. The pilot program is anticipated to be installed in September. GMHA is ready for the EBC linkage with Public Health. The STEVE-ER pipeline would connect to a Guam EHDI “mailbox” to get hearing screening results or current demographics of all infants born on Guam. 8. Mrs. Eclavea continued with Goal One (Part 2): Decrease loss to follow-up (LTFU) after failing initial screening from the current average of 25% to 10% or less. Data from December 2009 through March 2010 indicate babies born at GMHA had their LTFU rate climb from 7% to 75%. Now all infants that do not pass hearing screening are referred directly to GEIS for an audiological evaluation. SMBC had no infants LTFU for rescreen. The average of LTFU data from both birthing sites is at 24%. The strategies in reducing LTFU were reviewed. 9. Reviewed Goal 2: All infants who screen positive will have a full diagnostic audiological evaluation (DAE) before 3 months of age. Guam will reduce the loss to follow up (LTFU) between outpatient screenings to DAE from an average of 15% to 0%. Five infants were referred for DAE that were born from December 2009 through March 2010. One infant passed the AABR and did not need a DAE, one infant is going off-island for a DAE, one infant’s family has not shown twice for appointments, and 2 were seen and need a DAE. The issue of DAE of 11 infants born from January to May 2010 was discussed. Of these 11 children, 1 child passed, 3 refused services, 1 did not show for appointment, and 1 is having the DAE done off-island. Mrs. Mantanona explained why DAE is not available for children under 3 years of age. Audiological Associates will see babies over 7 months old with funding from GEIS. Mrs. Eclavea noted that Guam EHDI is looking at the option of bringing an audiologist with DAE equipment to perform DAEs possibly on a quarterly basis. Other options were discussed. 10. Reviewed Goal 4: Improve methods for identifying infants and children with late-onset, progressive or acquired hearing loss through data analyses and possible linkage with Guam Child Find. Reduce the loss to follow-up for infants with high-risk factors from the current average failure rate of 47% to an average of 20% or better. Data of high-risk rescreen for this same time period indicate an average high-risk LTFU of 27%. Family Supporters will begin follow-up support at GEIS for these high-risk infants. LTFU strategies will be implemented and tracked. The strategy for creating a central point of contact at GEIS is not feasible with GEIS at this time. 11. Reviewed Goal 5: Infants identified with a hearing loss will have a medical home and linked to family support services. Reduce the number of infants without a medical home from a current average of 69% to 20% or better, through an aggressive public awareness campaign to promote the concept of medical home to parents and healthcare providers. Data for this time frame indicates 14% of infants have a verified medical home. 12. Mrs. Eclavea noted that Dr. Leon Guerrero has indicated he would like to see information regarding his patients at Southern Public Health and FHP Clinic through a connection to ChildLink. Discussion and progress on this linkage is on-going. 13. Reviewed Goal 6: Improve and enhance identification and collection of standardized data to include effective follow-up strategies. The Family Supporters are currently assisting with collection of this data. 14. Mrs. Ritter reported on the 2 community outreach activities and 3 training events during this time frame. Open Discussion: 1. Mr. JJ Mendiola discussed the progress of the integration of metabolic screening data into Guam ChildLink. Mrs. Eclavea added that metabolic screening data is manually maintained at the GMHA Laboratory. Only abnormal results are entered. Data field needs have been discussed, and the anticipated target date for the piloting of the integration of metabolic screening data into Guam ChildLink is the end of this year. 2. Mrs. Flores informed the committee that the Guam EHDI Family Support Group will have a meeting on June 11th at the Parent Information Resource Center (PIRC). The target audience for this meeting is the GEIS parents. The meeting was adjourned at 12:55 pm.