Introductions with positionLylis Olsen, Audiology Consultant EAR Foundation of ArizonaChristy Taylor AzEHDI program Manager, ADHSJan Kerrigan, Newborn screening program manager ADHSRandi Winston, Audiology Consultant, screening coordinator EAR Foundation of ArizonaJust to give you something to compare your state with ours In 2006 we hit the 100,000 births a year mark
Those that we call lost to follow-up arent a homogenous group. We have found that at least three categories emerged and the strategies to deal with each differ.
Unknown-these are the kids that we just didnt have the data on. They made us jump from 60 to 40 immediately with only the efforts required to get the data submitted (not an easy task) get everyone trained, clean up the data. They were only lost to us, not really lost.
Delayed these kiddos are progressing through the system but not at the 1-3-6 pace we expect. There are lots of reason, some of them quite legitimate such as prolonged stays in the NICU, concern over whether the child will live, too medically fragile to sedate and then of course we have things like enough appointments, recurring bouts of otitis media, those tough kids that look like a mild loss but how much of it is fluid, how reliable are those bone conduction thresholds, are our audiologists experienced enough to trust their results or do they want to retest and confirm on another day.
LostThese are the ones that are doomed to show up at 2.5 years of age with speech and language delayThere are different ways of looking at the things that we can do to help those lost to follow-up. The common thread here is that these things, in our state, required legislation to happen. In 2005 we were able to pass legislation in Arizona to help address most of these issuesLegislation was passed in 2005 and enacted with rules in April 2006. Although the active follow-up began in April 2006, lots of work went led up to April with getting reporting in place that hospitals were reporting electronically on a weekly basis, forms were developed, piloted and training happened long before AprilScreening data comes in on a weekly basis, we want to give the hospital ample time to complete the outpatient screen and then send the results to the state in their weekly electronic transfer
Some of the large hospitals have audiologists that will report electronically through HI*Track for the infants born at their facility. For the rest we receive faxed data daily for subsequent hearing screens and tests from Audiologists, Clinics, ENT, etc. This info is entered into HI*Track manually (hearing database).
Before sending the next letter at the appropriate time interval, we look for passing results or diagnostic information prior to sending the next letter.
The actual case management is done through the Neometrics system (same as the one used for newborn metabolic screening). Screening information is moved from HiTrack to Neometrics through an automated data transfer. This link has only been in place since the beginning of this month and so far we have found that we can automatically transfer approximatelyXX% of the information and the rest must be manually moved to Neometrics. The reason for using Neometrics is
On Average we start off following 240 babies a monthWe will have received passing results on approximately 50% of those babies with the 3 month letter
Verifying information in Arizona there is a mandatory 2 week newborn screen (blood spot) and we have found that the medical provider at that screen is much more likely to be the one that continues to see the child and provide the medical home than the doctor that was identified during the inpatient stay.
We have based Arizonas follow-up program based on the 1-3-6 goals, giving the patient time to meet each milestone, before making further contact.
1 Month the hospital is still responsible for the initial outpatient screen. They schedule an outpatient appointment or contact the pediatrician that an outpatient referral is needed within the first month of age.
1 - So at 6 weeks of age, for babies who have not passed inpatient and have not come back for outpatient we send a letter to the Dr of record (info taken from 2nd bloodspot screen in metabolic database)
3 - For the 3 month letters we are contacting the family and the doctor of record. We call the doctor to verify that the baby is still in the practice, and we verify the familys address in the USPS website to ensure that it is a valid mailing address. We send out letters at 14 weeks of age for babies who have not passed an inpatient screen and have not passed an outpatient screen or received diagnostic testing
6 For the 6 month letters we again contact the family and doctor of record with written encouragement for the baby to receive services. This letter goes out at 26 weeks of age for babies who have not passed and are not yet receiving services or EI
2 weeks after the 6 month letter, we will first call the physician and then call the family to see if there is any further info, before closing a file as lost to follow-up.
We continue to accept reports and update the database on any screening data up to age one or evaluation data that comes in at any age.
Legislation alone will not guarantee you good follow-up numbers as many of you have probably figured out. We were able to identify some other things that go into more of a technical assistance and training category and in the next two slides broke it down into those things that pertain to screening programs and those that have more to do with the diagnostic side of thingsCommunity health centersFull time technical assistance to address p