Rhode Island
5-H61-10-001
Introduction
Newborn hearing screening is a mandated program in Rhode Island per the Rhode Island General Laws, Section 23-13-13. In 1994 the program was implemented at all seven birthing hospitals in the state. Leadership for the Rhode Island Early Hearing Detection and Intervention (EHDI) program is based at the Rhode Island Department of Health, in the Division of Community, Family Health and Equity. Screening, follow-up, quality assurance, tracking, and data management are coordinated through a contract with the Rhode Island Hearing Assessment Program (RIHAP) located at Women and Infants’ Hospital in Providence, Rhode Island.
Rhode Island has high screening rates that consistently exceed 99%, as well as a low refer rate that has been approximately 2% for the last several years. Following the 2007 Joint Committee on Infant Hearing (JCIH) recommendations, the program has focused on assuring that all infants are screened before one month of age, that each infant referred for diagnostic audiological evaluation receives it by three months of age, and that every infant identified with a hearing loss is enrolled in a program of early intervention and family support by 6 months of age.
There are two key data systems utilized by the program to monitor the program and assure quality. The newborn hearing screening data system (RITRACK) receives and stores demographic information, screening results, and diagnostic information. It is also used for tracking, quality assurance, and follow-up. The RITRACK data system is linked to KIDSNET, which is a population based public health data system with information about children’s preventive health services. Nearly all Rhode Island children born on or after January 1, 1997 have information available in KIDSNET. The system contains demographic information collected at birth from the birth certificate worksheet, a developmental risk assessment done at birth, newborn metabolic screening information, and hearing screening information. Hearing screening information is exchanged daily between RITRACK and KIDSNET. This allows for analysis of hearing screening data on several demographic levels. It also allows for verification of a child’s participation in Early Intervention (Part C) with family-to-family support.
1) Summary of Overall Project Accomplishments
The overarching goal of this project is to reduce the number of infants in Rhode Island who are lost to follow-up after failing a newborn hearing screen (an infant is considered lost to follow-up if the newborn hearing screen results were in the failure range and the outcome remains unresolved). To accomplish this important goal, we proposed improving our follow-up efforts by making enhancements and changes within our system, evaluating the effectiveness of these changes, and implementing them on a broader basis when appropriate. The first year grant activities focused on identifying reasons for loss to follow-up, and designing strategies and program enhancements to reduce loss to follow-up, consistent with the nine strategies found to be effective by the National Initiative for Children’s Health Care Quality (NICHQ). Year one activities included developing a system to identify and review information about children who were considered lost to follow up, developing and piloting a system of case review, developing systems to make screening results available to parents before a child is discharged from the hospital, and upgrading hospital equipment to assure quality.
Year two of the grant has focused on implementing and evaluating these changes. The Tracking and Outcomes Committee, based at RIHAP, conducts and reviews cases on a quarterly basis, the parent consultant tracks and collects information about children who need follow up, and the use of new informational forms and systems continues to be monitored. Outreach, information, and training about reporting in KIDSNET for audiologists in outlying areas of the state is ongoing, and collaborative efforts with other state programs continue to yield positive results.
RI has begun to see the impact of these efforts in the reduction of loss to follow-up cases in 2008 over 2007 statistics. Progress toward reducing the number of infants lost to follow-up has been steady. In 2007 the number of infants lost to follow-up was 70. The number of infants lost to follow-up in 2008 dropped to 42 (Attachment 3) representing a 60% decrease over 2007. The number of children lost to follow-up in a given year is derived by the following:
subtracting the number of infant who completed a re-screen from the total number referred for a rescreen: (241-206=35); subtracting the number of children who completed a diagnostic ABR test from the total number referred for a diagnostic ABR test: (82-75=7). These numbers are then added to get the total number of children in a given year. In 2008 this number was 42 (35+7). Three of the infants were from out of the state but born in Rhode Island, therefore we do not have demographic information in KIDSNET for these children and they are not represented in Table 2.
In 2008, in an effort to further understand reasons for loss to follow-up, the parent consultant attempted to contact all babies who were born in 2006, 2007, 2008, 2009 (January-June) and were still considered lost to follow-up in June of 2009. Cumulatively, over the four years there were 45 unresolved cases (Table 1). The parent consultant has been successful in resolving 39 (86%) cases. Twenty-three (51%) have scheduled appointments, 2 (5%) have been sent a letter, 6 (13%) are too old for screening, and 8 (18%) refused. Six of the cases (13%) we were unable to locate, and therefore resolve.
Table 1: Resolved and unresolved cases of infants lost to follow-up by birth year
Year of Birth / 2006N/% / 2007
N/% / 2008
N/% / 20092
N/%
Original Cohort Considered lost to follow-up by birth year / 41/100% / 69/100% / 43/100% / NA
Given to Parent Consultant for follow-up / 3/7% / 6/7% / 19/56% / 171
Resolved prior to 2009 / 38/93% / 63/93% / 24/44% / NA
1 Data for the first six months of 2009. The Parent Consultant proactively contacts loss to follow-up cases on a monthly basis.
Consistent with the national recommendation by the Joint Commission on Infant Hearing, in 2008 a protocol was developed to give screening results to parents before discharge. In 2009 this protocol was partially implemented. Implementation was more complicated than anticipated because each hospital has different databases and methods of reporting information. Total implementation for all RI birthing hospitals is scheduled to be completed by January 2010.
Training for newborn hearing screeners will take place in December 2009. The training module was developed by the National Center for Hearing Assessment and Management (NCHAM) and is focused on talking with parents in a culturally sensitive manner. Andrew P. McGrath, AuD, RIHAP Audiology Coordinator and Courtney O’Neil, AuD, RIHAP Staff Audiologist will conduct the training.
In 2008/2009, meetings were held with all of the State’s birthing hospitals to assess the strengths and weaknesses of the hearing screening program and follow-up procedures at each hospital, as well as determine the need for outreach. As a result of these meetings, the need for improving timeliness of reporting results to parents was identified as key to reducing loss to follow-up. In response, a system to automate hearing screening, and therefore provide results more quickly to parents was implemented. This also allowed RI to implement a system for scheduling an appointment at the time of discharge if it is determined that an infant should return for re-screen. A form has been designed and approved for use that describes the hearing screening results in a parent-friendly manner. These materials were developed in conjunction with the educational training staff at Women & Infants Hospital and are being put into use as each hospital begins to give results to parents (Attachment 4). In addition, in recognition of the fact that Rhode Island has a significant Spanish speaking population and that language barriers could potentially contribute to loss to follow-up, there are staff identified at Women and Infants Hospital and RIHAP who speak Spanish and Portuguese to assist in communicating with parents. Additionally, RIHAP has access to medical interpreters as well as the “Language Line” which provides interpreter services via telephone.
In April of 2009 four new agencies began providing home visiting services to families with infants. The First Connections Home Visiting program includes: Children’s Friend and Service, Family Resources Community Action, VNS Home health Services, and VNS of Newport and Bristol Counties. This program is designed as a risk assessment, response, and referral program. The program coordinates with RIHAP to follow-up with families whose children failed a hearing screen, did not keep their appointment for a re-screen, or did not get enrolled in follow-up care. This program is important in addressing children lost to follow-up.
Border baby issues such as obtaining screening and diagnostic information for infants who are transferred out of state in the newborn period for care, or for infants who have follow-up screening or diagnostic testing out of state, continue to present barriers to timely follow-up as the results are not usually available to RIHAP. In 2009 the RI EHDI program collaborated with the other New England states to develop a data sharing agreement to address these issues and improve follow-up, outcomes, and care coordination for these infants. Several New England States have signed the agreement that was developed together. Rhode Island will sign the agreement in 2010.
Barriers to progress
In the second year of this grant some barriers to reaching anticipated outcomes were encountered. Most significant were staffing issues, the state EDHI coordinator at the Rhode Island Department of HEALTH left the position in May and the position was unfilled until September due to staffing and budget constraints. In addition, the audiologist at RIAHP left that position and due to difficulty recruiting the position was unfilled for 6 months. In September 2009 a new Audiologist Coordinator was hired.
There are ongoing geographic barriers to accessing audiology services in Rhode Island.
There are three locations in the state to which RIHAP refers for diagnostic testing, all centrally located in the Providence area, leaving the other parts of the state without these services. Although RI is a geographically small state, families who live in the extreme northern or southern end of the state are approximately 50 miles from Providence. A two-hour round trip drive or bus ride may be a barrier to accessing follow-up for some families. Resolving this issue would involve bringing diagnostic audiology services to smaller community hospitals, which would require purchase of equipment and additional staffing. Locating services in the smaller hospitals utilizing offices that are owned and operated by Women and Infants Hospital remained under consideration in 2009. This of particular concern in the South County area as the number of children lost to follow-up who are born in the southern end of the state is disproportionate to the percentage of births.
Although RIHAP is the entity that coordinates newborn hearing screening and follow-up, RI audiologists are not currently mandated to report diagnostic results on assessments done in follow-up to newborn screening. Therefore, RIHAP may not be notified of infants who received follow-up at another facility, and these infants may otherwise be counted as lost to follow-up. Efforts are underway to address how this barrier might be alleviated (see objective 1.3, page 8).
There are some specific demographic and cultural barriers that continue to be significant factors in the reasons that children are lost to follow-up. Table 2 shows the demographic characteristics of those infants lost to follow-up in 2007 and 2008. Examining characteristics of those infants lost to follow-up is valuable to determine what kind of barriers and challenges these families might face
Table 2: Characteristics of Rhode Island Infants Lost to Follow-up After Failure to Pass a
Newborn Hearing Screen
2007N=691 / 2008
N=393
Hospital of Birth
Women and InfantsNorthern RI Community
Southern RI Community / 15/22%
9/10%
45/68% / 16/41%
6/15%
17/44%
NICU Status
NICU2Non-NICU / 5/8%
64/92% / 6/15%
33/85%
Insurance
PublicPrivate/Other / 44/65%
22/31% / 19/49%
18/46%
Maternal Characteristics
Age
>2020-29
30-39
40+
Race
WhiteBlack
Multiple Race
Asian Pacific/Other
Indian
Unknown
Education
<1212
>12
Language
EnglishSpanish/Other
Marital Status
SingleMarried / 19/28%
36/53%
13/18%
0%0
58/84%
8/11%
3/ 4%
23/33%
28/41%
17/25%
65/94%
4/6%
44/66%
23/34% / 4/10%
21/54%
10/26%
3/8%
30/76%
2/5%
2/5%
2/5%
1/3%
1/3%
9/23%
14/36%
11/28%
35/90%
3/8%
23/59%
15/38%
Developmental Risk Status
Positive
Negative / 56/81%
7/10% / 30/77%
5/13%
Home Visit
YesNo
Refused / 24/34%
30/45%
15/21% / 13/33%
20/51%
6/15%
1. One baby did not have information available
2. Per NICU protocol, most NICU infants receive a diagnostic assessment and not a rescreen. Additional characteristics are determined from the newborn developmental risk assessment.
3. N=39; However there were an additional 3 children in this cohort that were born in CT and therefore have no demographics available.
In general, the lost to follow-up cohort continues to have a disproportionate percentage of babies born in hospitals in the Southern area of the state. Most infants were in the well-baby nurseries, born to mothers who were predominately White, English speaking, and age 20-29. A higher percentage of mothers were risk positive through the newborn developmental risk assessment program in 2007 and 2008; as well as born to mothers’ whose educational levels did not exceed 12th grade. For 2007 data as compared to 2008, the percentage of infants lost to follow-up who were born to older mothers increased, as did the percentage of infants born to mothers who were non-English speaking and married. It is possible that the increase in babies born to mothers’ who are married and in the 30-39 age cohort is due to increasing use of assisted reproductive technology, but it is unclear why this would have been a factor in 2008 and not in 2008. Race data was calculated differently in 2007 and 2008 therefore these numbers are difficult to compare. However, the decrease in babies born to white mothers and slight increase in babies born to mothers who consider themselves of another race may have implications for the program.
Staff at HEALTH will need to explore that data further to determine if changes in this population are significant. Although these changes appear small, they must be examined as the characteristics of this group impacts the implementation of any strategy to address loss to follow-up. Geographic barriers will be explored on a more detailed level with the assistance of the parent consultant at RIHAP. This information will be taken into account when developing interventions to reduce lost to follow-up.