Congenital CMV (ccmv) Initiatives Across the United States: A Panel Discussion

Transcription

1 Congenital CMV (ccmv) Initiatives Across the United States: A Panel Discussion Stephanie Browning McVicar, Au.D. Kirsten Coverstone, Au.D. Ginger Mullin, Au.D.

2 Learning Objectives 1: Discuss CMV initiatives occurring across the United States with or without legislation. Learning Objectives 2: Describe successful strategies and barriers to increasing Congenital CMV (ccmv) awareness and/or ccmv testing. Learning Objectives 3: Identify resources available for use in implementing Congenital CMV initiatives.

3 State Early Hearing Detection & Intervention (EHDI) Coordinators

4 CDC : Hearing screening before 1 month Diagnostic evaluation before 3 months Early intervention before 6 months National EHDI Goals

5 Congenital CMV is the most common cause of non-hereditary hearing loss in children. In a large number of asymptomatic children with congenital CMV, hearing loss is the only sequelae (known abnormality). Congenital CMV and Hearing Loss

6 Types of ccmv Initiatives Education - only Screening of children not passing universal newborn hearing screening (UNHS) Universal Screening Legislatively mandated Not legislatively mandated

7 UTAH catalyst

8 UCA, Cytomegalovirus (CMV) Public Education and Testing UDOH establish and conduct a public education program to inform pregnant women and women who may become pregnant about CMV (incidence, transmission, birth defects, diagnostic methods, preventative measures) Provide information to: child care providers, school nurses, health educators, health care providers, religious organizations offering children s programs as part of worship services Utah EHDI

9 UCA, Cytomegalovirus (CMV) Public Education and Testing If a newborn infant fails the newborn hearing screening test(s) Medical Practitioner shall: Test the newborn infant for CMV before 21 days of age unless the parent objects; and Provide to the parents information re: birth defects caused by congenital CMV and available methods of treatment. Utah EHDI

10 Illinois (catalyst) Parent driven legislation There is a need for EHDI programs to prepare and be at the table. (even before the table is set)

11 ILLINOIS Public Act Sec of this legislation requires birthing facilities to provide cytomegalovirus (CMV) educational materials and newborn testing options to parents, as stated below: "(f) If a newborn infant fails the 2 initial hearing screenings in the hospital, then the hospital performing that screening shall provide to the parents of the newborn infant information regarding: birth defects caused by congenital CMV; testing opportunities and options for CMV, including the opportunity to test for CMV before leaving the hospital; and early intervention services. Health care providers may use the materials developed by the Department for distribution to parents of newborn infants."

12 Illinois Cytomegalovirus (CMV) legislation CMV Education Legislation - effective Jan 2016 If testing is elected, it must be completed by 21 days of age after an infant refers on their second hearing screening Goals To reduce disabilities associated with congenital CMV by: Raising awareness of women who may become pregnant; expectant and new parents Educating health care providers who care expectant mothers of infants for

13 Minnesota ccmv Initiative Catalyst Infectious Disease specialist, Dr. Mark Schleiss additional research/studies on CMV & past collaboration with MDH Kirsten Coverstone, Newborn Screening EHDI coordinator Longstanding interest and commitment to CMV as a universal newborn screening condition 2014 CMV conference, Salt Lake City, Utah MN Newborn screening program key staff attended MDH as EIP grant recipient from CDC Recent addition included a CMV project opportunity

14 MN CCMV Study - Collaboration Scope of CMV work Year 1 - Universal testing (consented) Methodology and sample comparisons Just in time Fact Sheet development (Parent/Provider) Year 2 Expansion to additional site/s & initiation of general population education efforts Year 3 develop/modify guidelines for ccmv screening Leads for MN Universal ccmv Project CDC Sheila Dollard, PhD MDH Maggie Dreon, MS, CGC UMN Mark Schleiss, MD Funding source CDC EPI grant & newborn screening staff in kind

15 MN CCMV Study Primary objective: Are dried blood spots (DBS) sufficient for detecting ccmv? CHIMES study - low detection rates for ccmv on DBS compared to saliva. Saliva universal screening would require states to develop new methods for collection. (costly & time intensive) Technology has continued to develop & detection rates for DBSs are believed to have improved to acceptable rates. 30,000 enrollees are needed to answer this question

16 MN CCMV Study Secondary objectives: Do parents find universal screening for ccmv acceptable? Determined by percentage of parents who elect to enroll. What is the parental experience when a child is identified to be positive for ccmv by newborn screening? Assess parental experience post-diagnosis.

17 Funding Where does it come from? Is there any?

18 Data Collection Considerations What information should be collected? Where will information be documented? Is reporting mandatory? Who is going to chase the data?

19 Data Collections through the EHDI system

20 KEY PARTNERS

21 Are Families Kept at the Center?

22 How does infectious disease departments get involved?

23 Challenges Professional concern Not all colleagues support this condition being considered for universal screening at this time

24 What type of testing is best? Can the state dictate the type of testing done? CMV 101

25 Staffing? Development of materials Education of hospitals, physician and parents Data collection (at the state and hospital level) Lab testing (in house/outsourced) Follow-up How do we fit in something new?

26 Considerations IL addressing the 21 day timeframe when hearing screening cannot be completed prior to 21 days IL define second screening is the second screening prior to or after discharge IL - will hospitals screen for CMV even when not mandated

27 R Clarification of when a newborn fails a hearing screen. The newborn must fail both hearing screens, the initial hearing screen routinely done at birth and the subsequent follow-up screen or if/when the initial failed hearing screen is obtained after 14 days of age before the medical practitioner is required to test for CMV.

28 R Special populations of newborns. In special populations of newborns where newborn hearing screening(s) cannot be accomplished prior to 21 days of age, testing for CMV is left to the discretion of the medical practitioner(s) caring for the newborn. Special population of newborns may include, but not limited to, premature or medically fragile newborns or newborns receiving on-going medical care.

29 ACCOMPLISHMENTS Screening prior to discharge Brochures Hospital notification Hospital engagement

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31 Accomplishments Collaboration among multiple stakeholders Increasing enrollment & # of locations Educational information developed: CMV 101 for medical professionals/colleagues CMV positive fact sheets (Just in time information) Parents and Providers

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33 Accomplishments We are beginning to answer some of the questions raised about ccmv universal screening. 76% of those approached choose to enroll Majority are accepting of ccmv screening 1 Positive asymptomatic, passed hearing screening Audiological monitoring

34 Accomplishments Help Stop CMV Utah logo A comprehensive website: health.utah.gov/cmv Brochures (In Spanish and English): CMV: What Women Need to Know, Congenital CMV and Hearing Loss, CMV: What Childcare Providers Need to Know, Newborn Hearing Screening: What You Need to Know Before You Have Your Baby, CMV Utah Two-Sided Flyer Care Documents: CMV Core Facts, CMV for Pediatric Care Providers, CMV for Obstetrical Health Care Providers, CMV PCR Testing in Utah Labs Posters: CMV During Pregnancy Can Harm Your Baby different orientations, messages and sizes Congenital CMV Testing Reference Posters: CMV Testing Information for Hospitals, CMV Testing Information for Midwives, CMV Testing Information for Providers, CMV Testing Information for Labs CMV Testing Information for Providers (letter to go with CMV Testing Fax Form) CMV Testing Information for Parents (to hand at time of testing eligibility) CMV and NBHS Status FAX From CMV, NBHS, PCP Flowchart CMV Materials Order Form CMV Awareness Promotional Materials (In Spanish and English): Hand Sanitizers with Informational Leaflet attached, Lip Balms, Toothbrushes all with CMV Awareness Messages, Ask Me About CMV buttons & accompanying campaign

35 (Continued) Accomplishments Online training module for Child Care Providers Online training module for Physicians (in process) CMV Mini-Documentary CMV Public Service Announcements (30 sec, 1 min, 3 mins) CMV Utah Facebook page and Twitter Account active social media CMV Awareness Focus Groups CMV online training webinars CMV baseline knowledge surveys Tables at Health Fairs Grand Rounds Presentations Local, state and national presentations Many, many, many in-person presentations Transit (bus/train) awareness campaigns Billboards Sports Programs, etc.

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41 Advice Patience Be at the table Partnerships & collaboration Try to understand any opposition/concerns learn what elements you need to address to gain support Learn from other states - reach out Remember challenges & obstacles can be overcome

42 Think outside the box Utilize student projects to increase help with your initiative Create as many partnerships as you can Assemble a medical/scientific advisory panel Lit review, lit review, lit review sign up for alerts for new research If at all possible, try for universal testing! Have a database system already created before your initiative starts Have a centralized, coordinated testing and reporting mechanism direct reporting from the lab/s is best! Have a dedicated person for CMV and a CMV data coordinator from the start Just keep swimming and do your best even in adversarial circumstances All of your hard work and efforts will literally be saving lives You can do it!!!!!

43 Get involved early on Educate yourself & inform your department about CMV Be proactive

44 Questions?

45 RESOURCES National Resources & Helpful Information American Family Physician: Healthy Children, American Academy of Pediatrics: Centers for Disease Control & Prevention: National CMV Foundation Information