Resources

COVID-19 NBS Response: Education and Outreach

Date
July 2020

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COVID-19 Education and Outreach Challenges, Practices and Resources: (refer to the COVID-19 web page

Practices 

Challenges

Resources/Strategies

Education and Outreach for Birthing Facilities                      
  • Hospitals/ birthing facilities are stretched thin, so it is important, now more than ever, that quality specimens are collected
  • Hospitals/ birthing facilities are not allowing families with infants back in the clinic or nursery for repeat testing
  • Moms and newborns are being discharged prior to the 24-48 hour timeline for dried blood spot collection                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       
  • The Indiana State Department of Health has developed tips to help increase timely, quality screens, which reduce the need for families to visit the hospital more than necessary. It is best to complete all three screens prior to discharge; heel stick, pulse oximetry for CCHD, and hearing. The following heel stick collection procedure tips will also reduce the need for uneccesary rescreens: 
    • Do not touch the filter paper collection site with heel, hands or capillary tubes 
    • Saturate circles entirely 
    • Fill out the required NBS card fields completely prior to sending out 
  • Send out communication to birthing facilities reminding them of good collection practices, including ensuring that the blood is soaked through on both sides of the collection card, and that someone else is checking for quality issues prior to sending out the specimen. If there are any doubts as to quality, collect another screen prior to discharge. 
  • Send out communication to birthing facilities to collect the newborn screen prior to discharge, even if it is before 24 hours. Remind birthing facilities that it is better to screen early than receive no screen at all. While it is ideal to have another screen done, this may not happen in light of COVID-19. 
  • For early releases/ early collections, the mom is sent home with the card and education, detailing that if something does not seem right with the newborn, to call the doctor immediately. For borderlines on conditions that are not life-threatening (i.e. carnitine, ALD), the report langauge could be changed and closed with a temporary COVID code. A repeat would then be requested. It is assumed that newborns in the neonatal intensive care unit (NICU) will get repeats as they are in the hospital already. For cases picked up on conditions that are life-threatening (i.e. CAH) after a first borderline, efforts are focused on either repeat or outside testing, ensuring that the doctor is aware of the issue. The same applies for other conditions (i.e TSH, PKU), in which there would not be a good outcome if not picked up. 
  • The Arizona State Public Health Laboratory has developed newborn screening guidelines for COVID-19 response: 
  • Missouri NBS Follow-Up staff are educating hospital/ birthing staff to have families stay at least 24 hours after birth to minimize early collections. They are also advising that if discharge must occur before 24 hours of life, then collect a screen regardless of age and assist the family to arrange for a repeat screen as asoon as safely possible. 
Education and Outreach for Providers 
  • Increase in the number of home-births         
  • Providers are not allowed in the office, or are operating with limited hours and have been stretched in response efforts
  • Newborn screening programs have been receiving many questions about how the newborn screening process is impacted by COVID-19 
  • Potential concern about primary care physicians knowing how to perform the bloodspot screen correctly 
  • Large increase in the number of homebirth kits ordered 
  • Some referral centers have closed outpatient clinics and are only practicing telehealth at this time
  • Some PCPs wanted to send newborns home before 24 hours 
  • The following video has been developed to start conversations about newborn screening in home birth settings: 
  • The following video has been developed to help midwives understand how to collect blood spots for newborn screening:
  • The New York State Department of Health, Utah Department of Health Newborn Screening Program and Texas Department of State Health services have issued letters for newborn screening coordinators and health care providers addressing frequently asked questions related to the impact of COVID-19 on the newborn screening process 
  • The New York State Department of Health issued a letter for health care providers to request that they use the secure remote viewer to read and review all newborn screenig results. Additionally, they requested health care providers be prepared to collect specimens in their own offices
  • Michigan NBS has been sending a physician letter saying that in light of the current situation with coronavirus, please use clinical judgement and advise the newborn's parents on the best time and location to have the repeat screen collected.
  • Send communication to midwives to remind them of the ordering process and offer an option for them to have several kits on hand, as opposed to ordering a kit for a specific client. In Michigan, typically midwives or birth moms purchase the card before it is sent. Michigan has developed a form that midwives can fill out after the card is used to document whether it should be invoiced or fee-waived. 
  • Check in with referral centers on current practices
  • Provide collection instructional packets to pediatric offices that reach out for assistance
  • Louisiana NBS provides results and recommendations to the medical providers and has them decide how and when testing will be done. Providers are organizing their clinics to see newborns, well babies and sick babies at different times and different settings. Some of them also have drive up services for sick babies.
  • In Tennessee NBS, it is recommended that the PCP do the repeat screen for anything other than a screen positive. If the PCP does not collect, they recommend the repeat to be done at the local health department. The program issued a guidance letter that discouraged the practice of early discharge (prior to 24 hours), which was placed on their website as well.   
  • Tennessee NBS sent letters to all hospitals/ birthing centers and midwives with guidance on packaging and transporting specimens for newborns with COVID-19 exposure or that are COVID-19 positive
  • The American Academy of Pediatrics (AAP) has issued a statement emphasizing that pediatricians should continue to follow federal and state guidelines on newborn screening. Pediatricians should follow their specific state guidance on procurement and follow-up of results. 
  • The AAP has issued new guidance to ensure children continue to receive ambulatory services during the COVID-19 pandemic: 
  • Newborn screening follow-up for metabolic disorders during the COVID-19 pandemic: Experiences from the Oregon Metabolic Clinic (primarily for dieticians) 
Education and Outreach for Families 
  • With the recent outbreak of COVID-19, there is even more misinformation, confusion and fear around what expecting and new moms need to do to stay healthy.
  • Genetic consultations may no longer be able to be held in-person at this time
  • Expecting Health has developed a resource page for expecting and new moms on "What to Know About Novel Coronavirus (COVID-19) and Pregnancy": 
  • Expecting Health has launched a new, free educational module that offers information about COVID-19, how it relates to newborn screening, and actions to take to stay healthy
  • Michigan NBS sends a parent letter saying that in light of the current situation with coronavirus, consult your newborn's primary care provider to determine the best time and location to have the repeat screen collected. 
  • The Maine Newborn Screening Program has developed information for parents in regard to COVID-19: 
  • Work with formula suppliers and pharmacies to arrange for deliveries to patients' homes. Request they provide extra formula and medication to support patients for a longer duration. 
  • Arrange for previously held in-person genetic consultations to be held via telemedicine.  
  • In Tennessee NBS, all home visiting has been stopped by health departments. If a newborn has a screen positive, they will follow-up with the tertiary center via an in-person appointment or telehealth. If they need a repeat due to a screen positive, they can go to a local health department to get repeats collected (except in one county that requires repeats trhough a PCP or tertiary center). If they are unable to reach a family by phone for a newborn with a screen positive, they will send the Sheriff's Department out to notify the family to contact the program immediately. 
  • The AAP has issued new guidance related to childcare during COVID-19
Education and Outreach regarding Health Information Technology
  • There is a need for follow-up to receive critical results from the laboratory electronically
  • With limited staff, the Colorado Newborn Screening Program has reduced mailing normal reports to twice per week. Print reports for HL7 and EReport messaging continue to be reported daily. 
  • Michigan NBS has been sending follow-up letters for positive and inconclusive cases by electronic faxing (RightFax)
  • The Virginia Department of Health has expanded their REDCap database capabilities to assist consultants. For example, the consultants can have laboratory results sent to follow-up (electronic fax) and the follow-up team will upload to REDCap to securely send to the consultants. They utilize electronic fax to send critical and follow-up information remotely to providers around the state. 
  • Virginia NBS is actively engaged in efforts to expand the use of electronic data exchange with submitting hospitals. They are happy to provide assistance by sharing knowledge and experience with other NBS programs. NBS electronic messaging implementation guidelines and onboarding information is available on their webpage: 
  • To reduce some paper reporting, follow-up staff are emailing abnormal NBS reports to most NICUs and some of South Carolina NBS' larger pediatric practices in lieu of printing and faxing them. 
  • Develop a system for laboratory staff to send out-of-range results to follow-up staff electronically and for follow-up staff to fax reports electronically to birthing facilities and hospitals. 
  • Nevada NBS has more than 90% of reports auto-faxed to submitters. They also have a result portal where providers can access their patients' reports.
  • Louisiana NBS has the state laboratory send abnormal or out-of-range results to follow-up staff via email. They are receiving reports and results from providers and hospitals via electronic fax, however, they are working on a system for follow-up staff to be able to fax information electronically to providers. 
  • Tennessee NBS has all PCP and Tertiary Center letters sent via electronic fax from the case manager's computer at home. The laboratory sends results for positive screens by secure email. 
  • Maryland NBS has discontinued hardcopy mailings of NBS test results to submitters
  • Missouri NBS utilizes a patient portal for hospitals/ submitters to retrieve NBS results electronically on a daily basis. 
Education and Outreach for NBS Staff  
  • As Washington NBS staff work in alternating shifts, the program rolled out the COVID-19 Opportunity for Professional Enrichment (COPE): a distance learning program for the days that staff are not in the laboratory. Over time, the program hopes to add more resources and have staff's own testimonials guide colleagues in choosing their learning experiences