X. Program Narrative

x. Program Narrative

INTRODUCTION

Vermont has recently completed its fourth full fiscal year of universal newborn hearing screening and follow-up. Every birth hospital in Vermont has committed to screening each newborn for hearing loss and to reporting the results to the Vermont Department of Health (VDH) Newborn Screening unit, within Children with Special Health Needs (CSHN), Division of Maternal and Child Health (MCH). For even more years, CSHN has organized and carried out the Hearing Outreach Program (HOP), the source of public health outpatient audiologic screening (including referral for diagnosis and enrollment into early intervention) for children birth to age four, including newborns who missed or who did not pass their newborn hearing screening. HOP is a unique intermediary step between screening and diagnosis. It utilizes otoacoustic emissions (OAE) testing, performed by pediatric audiologists, at sites in or near every VT birth hospital. It reduces the number of infants not passing their hospital screenings and rescreenings by two-thirds (in 2005, 61 of 95 “refers” passed their outpatient rescreening). In addition, Vermont is in its last year of funding from the Centers for Disease Control to support a tracking database which is integrated into the state’s Child Health Profile (SPHINX) along with electronic birth certificates, immunizations, lead screening, and a planned series of other public health MCH programs. Vermont has been unable to bring every newborn who does not pass the initial screening to diagnosis and early intervention within the ideal timeframes of screen-by-one-month, diagnose-by-three-months, and intervene-by-six-months. This project proposes study and strategic changes, implemented thoroughly through this small state, to reduce the loss to follow-up at all steps along the way. Improved reporting, improved communication/clearer protocols, and improved access to diagnosis are the key elements.

Lost-to-follow-up will be termed: LtRS (lost-to-rescreen), LtDX (lost-to-diagnosis), LtEI (Lost-to-Early Intervention), and overall lost-to-follow-up, LtFU.

NEEDS ASSESSMENT

Vermont continues to be one of the more rural states as measured by population density. Our birth rate has fallen, slowly but steadily. In 2005, Vermont had 6,139 in-state births of whom 5,877 (95.7%) were screened. There were nearly 200 homebirths, most of whom were not screened, so that the percentage of non-screened hospital births is quite small. Ninety-seven of the 5,877 did not pass their final in-hospital screen, and of the 97, two died. Fourteen of the 95 were lost-to-rescreening (LtRS) (14.7%), of whom 4 refused. 81 of 95 were rescreened as outpatients, most at HOP, a few at hospital or community office-based audiology. 61 of the 81 passed the outpatient rescreening. 20 did not pass their rescreenings and were referred to diagnostic audiology. 16 of the 20 received diagnostic audiology, of whom 10 passed and 6 were diagnosed to have hearing loss. Four of the 20 (20%) did not have diagnostic testing and were lost to diagnosis (LtDX). All who were diagnosed with hearing loss were referred to early intervention (zero % LtEI). Overall lost to follow-up (LtFU) rate was 18.9% (18 of 95).

Our experience with hearing screening suggests several slippery steps on the path from screening to diagnosis and early intervention:

From hospital to rescreen:

Data: 81 of 95 babies who did not pass in the hospital received outpatient screening (14.7% LtRS rate).

We agree wholeheartedly with the NICHQ project recommendations for strategies to reduce lost-to-follow-up (scripting the message to parents, getting a second point of contact for families, verifying identity of the primary care provider (PCP), making the follow-up appointment, reminder calls, making two appointments, fax-back to PCP, fax-back between audiologist and PCP, and obtaining consent for Early Intervention (EI)). Several of these strategies we already employ because of our HOP clinics. However, we note the following areas for improvement: Documentation (of baby names, parent names, parent contact, and, perhaps most often, primary care physician name) of information critical to communication about follow-up is sometimes incomplete or wrong. We contact the hospital nursery; sometimes there is a staff person who can locate missing information. Another strategy is to utilize the information from other points of contact, bloodspot screening and birth certificates.

Scheduling follow-up screening appointments with HOP is the option of the hospital and PCP, but routinely making HOP appointments before discharge would assure that HOP has contact information and can mobilize its reminder system.

Consistent, sensitive, culturally-relevant screener-to-parent messages would strengthen the assurance of follow-up. Our program has disseminated to every nursery informational brochures for parents, written by parents and program staff. However, we do not know how thoroughly these are used; in addition, we do not monitor the ongoing training and the actual message-giving of each hospital’s screening staff.

Cross-border communication, reporting, and follow-up issues are significant in New England, where small geographic state size and the location of birth hospitals on the borders contribute to large numbers of residents of one state being born in a neighboring state. About 10 percent of Vermont resident births are born—and screened--in neighboring states. The New England states, under the leadership and assistance of current federal funding sources (CDC and HRSA) are collaborating to forge interagency agreements facilitating reporting of information critical to assuring babies receive necessary follow-up.

Finally, the 2008 completion of the CDC-funded integrated database and tracking system, the Vermont Child Hearing Health System, within the SPHINX Child Health Profile, will streamline reporting processes, data quality assurance functions, and clinical tracking and follow-up for Vermont newborns. The strategies suggested by our needs are:

• Improved quality of documentation of screening results and contact information
• Making HOP appointments before discharge
• Improved parent materials and consistent messaging by screeners
• Cross-border agreements to assure interstate reporting, tracking and follow-up

• individual case management, in collaboration with the PCP, to assure family connection with rescreening.

From rescreen to diagnosis:

Data: 16 of 20 babies referred for diagnosis received diagnostic audiolog (LtDX rate of 20%).

Most babies who fail initial hospital screening in Vermont receive their rescreening through the Hearing Outreach Program. A daylong screening clinic, utilizing OAE technology and performed by audiologists with expertise in the pediatric age range, is held at least monthly at or near each birth hospital. HOP is directed by the pediatric audiologist who is also the director of the state’s newborn hearing screening program, and the CDC-funded integrated database will serve both screening and rescreening.

Maintaining the quality, capacity and accessibility of HOP is the keystone to Vermont’s public health assurance for newborn screening. HOP audiologists provide direct, face to face care for babies and their families, providing expert interpretation of results and next steps for diagnosis, explaining the importance of early diagnosis and intervention, and supporting families in accessing diagnostic audiology. HOP also communicates results and recommendations to primary care physicians and provides contact information about diagnostic centers.

Getting to timely, definitive diagnosis, however, is also a slippery point along the way. Vermont’s only in-state tertiary care center, which is also the only facility in VT which provides infant diagnostic ABR, does not perform sleep-deprivation and uses only sedation/general anesthesia. Three other tertiary care centers, each over the border in NH, NY, and MA, do attempt sleep-deprived ABRs. Parental and PCP concerns about subjecting a newborn to sedation/general anesthesia “just” for a hearing test causes delays or loss to follow-up in obtaining diagnosis.

There is no office-based diagnostic ABR available. We contacted each audiologist in VT in 2005 to ask for a self-report of their ability to provide diagnostic ABR for infants. We provided them the criteria (synthesized from fellow EHDI states) which would qualify a provider of ABR. Only tertiary hospitals felt they met the criteria, and one hospital-affiliated audiologist who had been attempting neonatal diagnosis voluntarily decided to cease. Referral of newborns to office audiology, utilizing sound-field technology, has resulted in multiple visits over months, without timely conclusion. In addition, the monitoring and treatment of intervening middle ear disease has obscured the urgency of a diagnosis of hearing loss.

Our program’s Hearing advisory council identified inconsistent medical diagnosis to complement audiologic diagnosis as a concern as well. A discussion among council audiologists, school consultants for the deaf, parents, and the state MCH director and CSHN medical director (both of whom are practicing pediatricians and AAP members; the latter is the “Chapter Champion”) identified confusion over what additional medical diagnosis is recommended, who makes the recommendations, and who carries them out. This project will work directly with the VT chapter of the AAP and AAFP through the forum of their monthly meeting with the MCH division of the Department of Health.

These suggest four areas of need:

• Support of HOP capacity statewide
• expansion of HOP services to include AABR and diagnostic ABR; and
• improved understanding of parents and PCPs about the why-when-and-how of diagnostic audiology for babies who do not pass their newborn screens, and about completion of medical diagnosis following audiological diagnosis; and
• individual case management, in collaboration with the PCP, to assure family connection with diagnostic testing.

From diagnosis to intervention:

Data: All 6 babies diagnosed in 2005 were referred to EI (LtEI rate of zero%).

An essential area of need is for the complete and timely reporting of diagnostic results to the newborn hearing screening program, to enable the program to assure entry into early intervention as well as the completion of medical diagnosis. While hospitals and their nurseries routinely screen and report their screening results to the program, diagnostic centers—only one of which is in Vermont itself—do not. When a baby is rescreened at HOP and does not pass, the next step—timely ABR diagnosis—is discussed with the family and the contact information for diagnostic sites is provided. This information is also reported to the baby’s PCP. A release of information form is given to the parents to present to the chosen diagnostic site, to facilitate reporting of results back to the program. However, there is no mandated reporting, and in nearly every case, obtaining the final diagnostic information requires persistent and exhaustive effort from program staff. The New England EHDI programs are collaborating in this area of cross-border communication as well. The CDC-funded integrated database is ready to receive diagnostic reports.

Finally, although we are certain that every baby diagnosed is referred to early intervention, we have inconsistent access to IFSP dates and even less information about the utilization of early intervention once a baby is referred. Vermont’s general early intervention program, Family, Infant and Toddler Program (FITP), contracts with the Vermont Center for the Deaf and Hard of Hearing’s Vermont Parent-Infant Program (VtPIP) to provide case management and direct services for infants and toddlers with hearing loss, statewide. FITP formerly was a unit within CSHN, and is now part of a new Department for Children and Families (DCF). DCF and VDH are sister departments both within the Agency of Human Services, which is promoting non-categorical and integrated approaches to serving populations. It is an opportune time to forge agreements that will enhance services for children. Thus, the four areas for improvement include:

• Complete reporting of babies’ diagnostic testing results, from both in-state and out-of-state centers;
• Improved coordination and datasharing between the program and the early intervention program.

• individual case management, in collaboration with the PCP, to assure family connection with early intervention.

METHODOLOGY

We will undertake a Plan-Do-Study-Act (from IHI) for model improvement process for implementing stategies which will result in a decrease in lost-to-follow-up rate. We will utilize three advisory-workgroups: the existing Hearing Advisory Council and its parent committee, a workgroup of nursery screening managers (which has met with us at least annually since 2003, and the existing monthly meeting of the VDH-AAP-AAFP-MCH group (described in Organizational Information, below). These groups will be referred to as: Parents; Screeners; and AAP.

Goal 1: To put into practice the knowledge that parents of newborns with hearing loss are the best advisors to the development of systems of care for their children.

We will recruit and hire a parent program advisor, through the Vermont Parent Infant Program, the statewide early intervention program component for young children with hearing loss, which already supports parent advisors for children in their program. The parent will be a member of the project team. We will design and implement a structured interview with families who have been through the hearing screening process to identify strengths and weaknesses of their journey from screening to early intervention. These interviews will inform our project activities at every level. In addition, we will continue to confer quarterly with the existing CSHN Hearing Advisory Council (created in the early 1990’s and co-chaired by a parent and hearing professional) and, especially, its parent committee.

Goal 2: From hospital to rescreen: To reduce the percentage of newborns who, having screened initially positive for hearing loss, do not receive a timely follow-up screening.

After gathering input from the project Screeners group, we will undertake steps to support nursery screeners to improve the completeness of data reported to the program, and specifically to validate the PCP information and family contact information. We will adjust HOP scheduling practices to facilitate the making of HOP appointments for babies before they are discharged from the hospital. Working with our advisory groups we will develop, disseminate, promote and monitor the use of materials for parents. We will join with the New England EHDI states, our neighbors, to finalize and implement cross-border agreements to assure reporting, tracking and follow-up of VT resident babies born out of state, and out-of-state follow-up for other-resident babies born in VT. We will expand our program staffing so that individual case management, in collaboration with the baby’s PCP, works to assure that rescreening occurs within the first month. These objectives and their associated activities will be carried out by the program audiologist, the program administrative assistant, the new parent advisor, and a new staff member, a pediatric nurse.

Goal 3: From rescreen to diagnosis: To increase the percentage of newborns who, having confirmed positive screen for hearing loss, receive a timely audiological diagnostic evaluation

HOP is the principal provider of rescreening for babies who do not pass their initial screen. The capacity and accessibility of HOP to rescreen newborns will be sustained by supporting necessary staffing levels. In order to rescreen NICU infants according to the new JCIH recommendations, HOP will add the equipment and training necessary to provide AABR screening statewide. To address the lack of access to sleep-deprivation diagnostic ABR, we will expand HOP services to include new diagnostic ABR technology which does not require infant immobility nor absolute quiet. The equipment is also combined with OAE as is eminently portable, making is highly appropriate for itinerant HOP services. Together with our advisory groups we will develop and promote strategies for the achievement of a timely diagnosis—even when in the presence of the co-morbidity of middle ear disease. To encourage PCPs to refer newborns with hearing loss for further medical diagnosis, we will, in collaboration with the AAP group, survey PCPs and ENTs for beliefs and current practices around diagnosis, create and disseminate an educational message for PCPs to promote genetic, ophthalmologic, and ENT referrals as appropriate, and test outcomes. As above, we will expand our program staffing so that individual case management, in collaboration with the baby’s PCP, works to assure that diagnosis occurs within three months.

Goal 4: From diagnosis to intervention: To assure that all newborns diagnosed with hearing loss are referred to…and receive…appropriate early intervention services.

We believe that the Birth Information Network (BIN) statute which is the basis for hospitals’ reporting nursery screening results to the program should also apply to hospitals performing diagnostic audiology for infants up to one year of age (the age limit of the BIN statute). One of the early activities of our project will be the testing of this interpretation by pursuing routine reporting of hospital diagnoses, from in-state hospitals.