Newborn Hearing Screening Advisory Committee Meeting Minutes

Transcription

1 Newbrn Hearing Screening Advisry Cmmittee Meeting Minutes Nvember 12, :00-5:00 p.m. Minnesta Department f Educatin Cnference Center Rm CC Highway 36 West, Rseville Facilitatr: Recrder: Melinda Marslek, Nicle Brys, Cara Westn Attendees: Kathy Andersn, Nicle Brwn, Mary Cashman-Bakken, Dennis Ceminski, Kirsten Cverstne, Jhn Gurnaris, Candace Lindw-Davies, Karleen Maeurer, Jscelyn Martin, Linda Murrans, Glria Nathansn, Peggy Nelsn, Sara Oberg,, Lisa Schimmenti, Geffrey Service, Kara Tempel Absent: Mary Hartnett, Tina Huang, Michael Seversn, Rhnda Sivarajah, Emily Smith-Lundberg, AGENDA ITEM 1. Welcme and Annuncements 2. Cmmittee Wrkgrup Updates Transient Hearing Lss Abby Meyer NICU Guidelines Jscelyn Martin DISCUSSION POINTS/DECISIONS/NEXT STEPS Linda Murrans mtined t accept September meeting s minutes, Jhn Gurnaris secnded Emilee mentined that the Wilder Fundatin is the new meeting lcatin fr 2015 and the time has changed t 1pm -4pm. Als, the May meeting date has been changed t May 27 th. Nicle Brwn gave a brief summary f the web evaluatin sent in August (members liked many different aspects f the new annual reprt frmat, several members requested a mre stable meeting lcatin) Transient Hearing Lss Wrkgrup Update Tw pririty areas were identified, get data n the final result and develp a strategy fr encuraging families t return fr fllw-up MDH has been cllecting fllw up data and fund that secure wrks better fr btaining results frm audilgists, a large number f children cntinue t have fluid fr 6-9 mnths after initial diagnsis, and PCP letter did nt emphasize the imprtance f nging fllw-up Grup decided that transient is nt a gd term t use, caregivers shuld treat all hearing lss as permanent until prven therwise. A handut fr audilgists t give t parents f children with this type f hearing lss was develped by MDH that we will try with sme clinics. Card will be shared mre widely after it has been tested and finalized. NICU Guideline Revisin Wrkgrup Update Mving frward, but still a wrk in prgress. Flwchart will be sent t the wrkgrup fr review and vte befre bringing t the full cmmittee. Page 1 EHDI NHSAC

2 3. Partner Updates MN H&V Lss & Fund Vide Pilt Prject Candace Lindw-Davies MN Cllabrative Teacher tlkit Kristi Twnshend Lifetrack D/HH Adult Rle Mdel/Mentr Needs Assessment Beth Quist MN H&V Lss & Fund Vide Pilt Prject Natinal H&V received a grant t distribute a vide t hspitals and clinics t be used t encurage families t return fr fllw-up. Candace was invlved in a pilt f this prject. Targeted t lcatins with higher lst t fllw-up rates. Sites culd use the vide hwever they wanted (bradcast thrughut the baby center, bradcast t individual rms, fr staff training) Participating sites were asked t cmplete a survey abut their experience with the vide. 90 sites acrss the cuntry were invlved. Results frm the natinal survey were pretty generic s MDH/H&V plans t d anther state-specific survey after sites have had mre time t use it (implementatin is nging) MN Cllabrative Teacher Tlkit prject Omitted speaker was nt able t attend. Lifetrack D/HH Adult Rle Mdel/Mentr Needs Assessment Beth Quist frm Lifetrack utlined plans fr a D/HH Adult Rle Mdel/Mentr Needs Assessment thrugh Wilder Research. Gal f the Needs Assessment is t develp recmmendatins fr the enhancement f the Rle Mdel/Mentr prgram Plan invlves cnvening an advisry cmmittee f 12 members (at least 6 will be D/HH); cnducting a literature review; reviewing secndary data; and cllecting data thrugh key infrmant interviews, fcus grups with parents f D/HH children and D/HH adults, and a web survey f parents f children wh are D/HH. Assessment and a final reprt will be cmpleted by June A frmal cmmunicatins plan will be develped t keep peple updated thrughut the prject. Page 2

3 4. MDH Update Disparities Melinda Marslek & Zay Rezania 5. BREAK Disparities in timely newbrn hearing screening Children whse mther is black r American Indian are less likely t be screened by ne mnth f age than children f white mthers Children whse mther is Hispanic are significantly less likely t be screened by 1 mnth Children f yunger mthers are als less likely t be screened by 1 mnth Mther s educatin is psitively assciated with timely screening mthers wh are cllege graduates mre likely t be screened by 1 mnth Disparities in timely diagnsis Largest disparities are between races Children f Hispanic, black and American Indian less likely t be dx by 3 mnths Yunger mthers were less likely t have children dx by 3 mnths Mther s educatin is psitively assciated with timely diagnsis Disparities in Enrllment and Timeliness f enrllment in Part C/ Early Interventin Children whse mther is Asian are less likely t be enrlled in Part C/EI Children f Hispanic mthers mre likely t be enrlled Yunger mthers are less likely t have enrlled children Children whse mther is black are less likely t be enrlled by 6 mnths f age, but n significant differences between grups in time frm dx t enrllment A smaller percentage f infants whse mther is yunger met recmmended Part C enrllment timelines, but nt significant difference Children f mthers with less educatin were less likely t be enrlled by 6 mnths f age, but n difference in time frm diagnsis t enrllment Ideas t address Adapt successful strategies used by ther prgrams within MDH Identify clinics that see a higher percentage f the nn-white ppulatin t use fr trying ut strategies Cntinue t wrk with Hands & Vices Cultural Guides t encurage families t cnnect with EI. Annuncement f Vice-Chair electin results Jscelyn Martin 6. Electrnic reprting fr newbrn screening Amy Gavigli Meeting Membership Nicle Brwn Cntract with Oz Systems signed in May. Minnesta s name fr MN s Oz Systems is MNScreen MDH have reached ut t several hspital t begin implementatin 3 hspitals are currently reprting via MNScreen (Oz System) MDH is wrking with 40 additinal hspitals. Hspitals using Epic and members f CHIC have been excluded fr nw. Because f special circumstances will wrk with these grups individually. Margaret Ratai, LPH Nurse has resigned as member due t change in psitin Jcelyn Martin was elected as Vice Chair Page 3

4 7. CMV Cnference Highlights & Discussin Cnference Summary & Next Steps Discussin Mark Schleiss CMV disprprtinately affects African American children Utah has implemented CMV testing fr all infants wh d nt pass their newbrn hearing screening. As a secndary result there has been an imprvement in their gals Dr. Schleiss described varius studies regarding CMV. Study 1: examine newbrn bld spt wh had failed newbrn hearing screening fr presence f CMV DNA (annymized bldspts) Imprtant t test fr CMV in infancy because it is cmmn fr infants t acquire thrugh breastmilk r thrugh cntact with ther infants/children. 2.7% f babies wh did nt pass their newbrn hearing screening tested psitive fr CMV cmpared t 0.4% wh passed their newbrn hearing screening Unknwn if amunt f CMV DNA in bld spt crrelates with amunt f disability Linking CMV testing t Newbrn Hearing screening culd be useful Study 2: Cntributin f CMV infectin in the setting f established hearing lss in MN children Majrity f children wh have CMV-related hearing lss d nt have a hearing lss at birth Examined archived newbrn bld spts fr the presence f CMV DNA in children with hearing lss CMV DNA fund in 19 f the 68 bld spts tested 7/19 had passed newbrn hearing screening 15/19 had bilateral hearing lss Cchlear implantatin was perfrmed in 10/19 f the children The diagnsis f cngenital CMV had nt been suspected in any f these subjects Is universal newbrn screening fr cngenital CMV gd public health practice? Utah CMV Public health initiative Requires department f health t ffer infrmatin t a variety f grups including child care wrkers and pregnant wmen Directs medical practitiners t test infants wh d nt pass their newbrn hearing screening Ntify medical practitiners f requirement t test Several ther states have similar bills in prcess Mst babies with cngenital CMV are destined t have typical develpment Unclear whether there is a demnstrated benefit f early detectin, interventin, and efficacius treatment f CMV fr asymptmatic infants Utah screening law was criticized by AAP because the state is telling the physician hw t practice medicine and the language in the bill that specifically mentins ff-label treatment with valganciclvir (cncern with liability risks if nt prescribed) N clear ecnmic benefit f early ganciclvir prescriptin Genetic privacy cncerns in MN may make CMV bld spt testing mre difficult Mre infrmatin needed abut cst-benefit f early interventin and specifically antiviral therapy (symptmatic vs. asymptmatic) Prpnents f universal CMV screening pint t infants wh have cngenital CMV but pass their newbrn hearing screening they culd be mnitred t see if hearing lss develps if family knws they have CMV and are at risk fr develping a hearing lss Page 4

5 Wuld it cause unwarranted amunt f wrry in parents? Fcus grups have shwn that parents verwhelmingly wuld prefer t knw that their child has CMV and culd develp hearing lss A majr paper n the imprved neurdevelpmental utcmes assciated with ganciclvir therapy in symptmatic infants with cngenital CMV will be published sn 8. MDE Update Reprt Students wh are D/HH Mary Cashman Bakken 9. Clsure Item Descriptin Legislative Reprt 2014 MN Students wh are Deaf/Hard f Hearing (D/HH) Visited 5 schls last year that exceeded MCA standards (D/HH students did better than hearing peers) did bservatins and interviews Survey Highly qualified teachers Strng parent invlvement High expectatins Great use f technlgy Strng cmmunity supprt Asked schl districts several questins and determined that this was an area we needed t fcus ur attentin n t prvide leadership and cnsistency D/HH graduatin is 69%, which is higher than all special educatin at 57.9%. General educatin is 83% Drput rate fr D/HH is 1.5% cmpared t 2.5% in general educatin Next Advisry Cmmittee Meeting: Feb. 11 th, 2015 Time change fr 2015 meetings 1-4pm LOCATION change fr all 2015 meetings: Amherst H. Wilder Fundatin 451 Lexingtn Pkwy. N Saint Paul, MN Ntify Chair if there are any Partner Updates t put n the agenda Adjurnment Candace mved t adjurn, Linda Murrans secnded Page 5