Utah Department of Health, Reducing Loss to Follow-Up, HRSA 08-030, Richard S. Harward

Utah Department of Health, Reducing Loss to Follow-up, HRSA 08-030, Richard S. Harward

PROJECT NARRATIVE

1.INTRODUCTION

The goal of this initiative is to reduce the number of infants who are lost to follow-up following a failed hearing screening, who have limited access to newborn hearing screening, and to develop systems to increase screening of home births, and to increase tracking and reporting capabilities for these infants. Each year more than 100 infants are born in Utah with a permanent hearing loss. This number compares with the national incidence rate of 3 in every 1,000 newborns having a hearing loss. Although these numbers may appear small, hearing loss is the most frequently occurring birth defect and the consequences of permanent hearing loss can have long-term detrimental impact on all aspects of a child’s development. When children with permanent hearing loss are identified early, fit with appropriate hearing aids or cochlear implants, and receive early intervention services from trained staff, most are able to progress at age-appropriate rates (Kennedy et al., 2006;Moeller, 2000; Yoshinaga-Itano, Sedey, Coulter, & Mehl, 1998), and require few, if any, special education services. Additionally, there is a cost savings, primarily in reduced need for special education services, of at least $400,000 per child (Groose, 2004;Mohr et al., 2000). In 1998, the Utah State Legislature passed a law requiring all birthing facilities to implement universal newborn hearing screening programs by July 1, 1999. Forty-one states have now passed legislation that requires newborn hearing screening (NCHAM, 2007). Nationally, over 90% of newborns are screened, and the number of children under age five receiving cochlear implants has more than quadrupled in the last five years to more than 2,000 children per year (NCHAM, 2007). These figures represent the growing awareness as well as the understanding of the critical need to identify babies with hearing loss as early as possible.

To assist in the early identification of infants with hearing loss, a variety of organizations including the American Academy of Pediatrics, the American Academy of Audiology, the March of Dimes, the Joint Committee on Infant Hearing, and the National Association for the Deaf have recommended that all babies be screened for hearing loss before they leave the hospital (White, 2003).To meet the need for early screening, all states and many territories have established Early Hearing Detection and Intervention (EHDI) Programs through their state Department’s of Health (White, 2004).The EHDI benchmarks for hearing screening and follow-up are known as the “1-3-6” plan – screening by one month, diagnosis by three months, and early intervention by six months.

Prior to the implementation of universal screening, the average age at which hearing loss was identified in children was 18 months to 3 years of age (Commission on Education of the Deaf, 1988). The most recent figures from the Centers for Disease Control for calendar year 2005 (Directors of Speech and Hearing Programs in State Health and Welfare Agencies Annual Report), estimates that - for the 46 states, 2 Territories and 1 District reporting - 59.9% of the infants who did not pass screening through an EHDI Program are considered “lost to follow-up” or “lost to documentation”. And, of those infants who received a diagnosis of hearing loss (subsequent to the initial screening and follow-up) only 70% were enrolled in Early Intervention Programs. Clearly, we still have much work to do in reducing the numbers of infants lost to follow-up in the EHDI system.

The EHDI program in Utah mirrors what is happening at the national level. Virtually all (over 98%) of the newborns in Utah are now screened for hearing loss (NCHAM, 2005).However, for the four years from January 1, 2000 through December 31, 2003, of those referred from the initial hospital screenings, 25-30% did not complete outpatient screening and diagnostic results could only be documented for 60-70% (of those referred from screening programs). This group is at a higher risk for hearing loss by failing the first screen and at a higher risk of being lost to follow-up.

Recognizing the importance of early identification of hearing loss, Utah has been a leader since the early 1970's in developing innovative strategies for early identification of congenital hearing loss. It is important to recognize, however, that hospital-based screening is only the first step in a process to identify babies with hearing loss and provide them and their families with timely and appropriate services. The benefits of early identification are only fully realized when a child who fails the initial hearing screen completes the necessary follow-up including re-screening, diagnosis, access to sound (appropriate amplification), and early intervention services. Additionally, this follow-up must be linked to the child’s medical home for collaboration and reinforcement. Unfortunately, many hospitals in Utah have struggled to make these connections. For the benefits of universal newborn hearing screening to be available to babies and their families, screening must be appropriately coordinated and linked with diagnostic and early intervention services in a way that is family-centered and culturally competent.

Healthy People 2010 identified early identification of hearing loss as one of the most significant preventable threats to people’s health. Goal 28-11 (revised) from this national plan is to “Increase the proportion of newborns who are screened for hearing loss by age 1 month, have audiologic evaluation by age 3 months, and are enrolled in appropriate intervention services by age 6 months”. Goal 28-13 is to “Increase the proportion of persons with hearing impairments who have ever used a hearing aid or assistive listening device or who have cochlear implants”. (Although many professionals consider enrollment in appropriate early intervention to include amplification devices, Goal 28-13 specifically addresses amplification.) Additionally, Goal 16-23 (revised) is written to “Increase the proportion of children with special health care needs who receive their care in family-centered, comprehensive, and coordinated systems”.

Measure 12 from the MCHB National Performance Measures is to monitor and report the “Percent of newborns who have been screened for hearing before hospital discharge”. These national performance measures are at the core of the Utah EHDI Program.

The UDOH has developed a number of health-care information systems including systems for Newborn Blood (heelstick) Screening, Statewide Immunization, EHDI, Vital Statistics, Birth Defects, Early Intervention, and WIC. Each of these systems belongs to a corresponding health-care program, which is responsible for managing the individual programs’ data. In 2000, the UDOH began the Child Health Advanced Records Management (CHARM) initiative to address the need for integrated child health information. The development of the CHARM data integration system is to create a virtual health profile for every child and to allow real-time data sharing across health care programs and with the child’s medical home. When it becomes fully operational, CHARM will provide immediate access to information that is stored in the program specific databases to track and monitor screening results, immunization status, referrals, follow-ups, assessment, treatment and outcomes for children. (A more complete description of CHARM is included in Section 7.) The linkage of the Hi*Track newborn hearing screening database to a limited number of participating programs in the CHARM network has already reduced data entry, improved data quality, and increased the tracking ability of infants previously lost to follow-up.

2.NEEDS ASSESSMENT

The target population for this project is all live births in Utah (and their families). The most recent published report from the Utah Department of Health’s Center for Health Data (Utah’s Vital Statistics: Births and Deaths, 2005, showed that Utah had 51,517 resident births (birth occurrence for 2005 was 52,563), of which 79.7% were Caucasian, 14.7% were Hispanic, 2.9% were Asian or Pacific Islander, 1.2% were American Indians, .8% were African-American. Additionally, .7% of the birth certificates were marked “other” or left blank. The land area of Utah is 82,168 square miles with the number of persons per square mile being averaged at 25.9 as compared to the average persons per square mile in the United States of 77. Resident births for 2005 show that 76.9% of births occurred in urban areas, 19% of newborns were born in rural areas (more than six but less than 100 persons per square mile) and 4.1% were born in a frontier area (six or less persons per square mile). In addition, 20 of Utah’s 29 counties are designated as Health Professional Shortage Areas and eleven counties are designated as Medically Underserved Areas. In these areas, access to health care and appropriate medical and audiological follow-up is difficult, at best, or impossible to obtain.

Universal newborn hearing screening is done at all 41 birthing facilities, as well as the intermountain region’s pediatric specialty hospital, Primary Children’s Medical Center (PCMC) in Salt Lake City. All report hearing screening data monthly to the State (Utah Department of Health) with the HI*TRACK data management and tracking software. Approximately 1.1% of Utah newborns are born outside of a designated “birthing facility”. The latest complete year (2006) of hearing screening data (see Attachment 8, HI*TRACK Flow Chart Report 2006) show that 98.1% of occurrent births received hearing screening. Of those screened, 94.9% passed the initial screening and another 4.2% of total babies screened passed outpatient screening or rescreening (documenting pass results for 99.1% of babies screened). Current tracking data show that 410 infants are “lost to follow-up” following inpatient screening or results have not yet been documented in HI*TRACK (.8%). Another 595 babies have NO results reported in HI*TRACK (1.1%). Of those, five hundred are home births that may not have immediate access to hearing screening (See Attachment 9, HI*TRACK Flow Chart: Home Births).

The Utah EHDI Program surveys licensed audiologists at least every two years to document those who provide services to children, what types of testing can be provided, whether Medicaid is accepted reimbursement coverage, and if Spanish-speaking services are available. A survey completed in August of 2006 revealed only 19 audiology sites and 80 audiologists statewide that can provide diagnostic ABR services to newborns. Additional sites that provide screening and some diagnostic audiology services for infants and toddlers are also documented. Using this information, a free resource brochure is published by UDOH and made available to hospital screening programs, families, audiology offices, pediatricians, and family practice physicians. Some infants born in Utah’s “border towns” may receive newborn hearing screening in Utah, and follow-up in neighboring states (or the reverse). There is considerable challenge to track and document services received in bordering states.

The HI*TRACK data and tracking system lists a medical provider entered in 57.6% of hearing screening records for 2006 births. Currently, there is no way to confirm that the provider listed in the child’s hearing screening record is indeed the child’s Medical Home, or if it is simply the provider (on call) who evaluated the baby in the newborn nursery. Efforts to link babies to a medical home and then have access to accurate information about that medical home will continue to be an activity addressed through this grant proposal.

Access to accurate Early Intervention enrollment data is also a challenge to be addressed in future EHDI program efforts. Developing and sustaining family-to family support is a focus area of intervention activities in Utah. The Parent Infant Program (PIP), the Early Intervention Program that provides services through the Utah Schools for the Deaf, is represented on Utah’s Newborn Hearing Screening Advisory Committee (NBHS) (see Attachment 10, UNHS Committee), and collaborates with Utah’s EHDI program, early intervention services, and parents. Utah’s EHDI program partners with and supports the AG Bell–Utah Chapter and the Hands and Voices – Utah Chapter, activities providing family-to-family support. Currently, the Utah EHDI Program does not document the number of families involved in or who have access to family-to-family type support systems. This documentation will also be addressed and improved in the coming months.

Although there is almost universal support for the concept of early identification of hearing loss throughout Utah, many important challenges still remain. Specifically, infants who do not receive appropriate follow-up after failing the initial newborn screen, infants who don’t receive a timely diagnosis after failing a second screen, and infants diagnosed with a hearing loss not receiving timely and appropriate intervention services (including the connection to a medical home), highlight weaknesses in the current system.

Utah recently participated in a six state study focusing on “Loss to Follow-Up in Newborn Hearing Screening Programs” with RTI, International (funded by the Centers for Disease Control and Prevention). A summary of their findings was made available to state participants and to the CDC in June, 2007. The Utah specific information from the RTI report and the strategies that were found to be effective in the NICHQ learning collaborative are emphasized through the planned activities and strategies to in this proposal. The RTI report identified Utah specific factors and barriers to screening and intervention, but was unclear as to which follow-up strategies could be most successful or why. The RTI report stated that despite an individual hospital’s best tracking and follow-up efforts, parents still do not bring their infants in for re-screening, diagnosis, or timely intervention. This report also highlighted the complexities parents face in navigating the EHDI ‘process’ – including screening, diagnosis, habilitation, and intervention. (A complete copy of the Utah RTI CDC report is available upon request.)

Focus groups with key EHDI stakeholder groups in Utah revealed the following major challenges and barriers to follow-up:

A shortage of audiologist services in rural areas and those trained to work with infants.
Inadequate or misinformed screening counseling by hospital screening staff that downplays the importance of follow-up.
Lack of adequate private insurance to cover the full cost of diagnosis, amplification, and other intervention services.
The process to obtain hearing aids is a cumbersome and often lengthy process although a loaner program through the state health department is a valuable resource.
Physicians are not always aware of all the programs available to support families or how to guide them through the follow-up process.
Physician knowledge and attitudes regarding hearing loss are improving but the “wait and see” approach is still pervasive.
A general lack of understanding among parents regarding hearing screening and hearing loss.
Families are unclear about how to proceed with re-screening and diagnosis—they are given a lot of written information but not much one-on-one guidance and support.
Language barriers for Hispanic populations exist—hearing professionals lack the educational resources and interpreter services to adequately care for this growing population.
Audiological services at the state’s major children’s hospital are viewed as insensitive to the deaf culture and too staunchly pro-amplification.

The Maternal Exit survey responses highlight processes that are being done well and those that could be targeted to improve or reduce infants lost to follow-up, including:

The majority (of respondents) indicated that they understood the meaning of the hearing screening test result (87%) and believed it to be true (88%).
Nearly all indicated they knew what to do next (94%) and thought it was important to retest soon (89%).
Over half (65%) indicated feeling anxious about the result.
Half (50%) indicated that the hospital had made the follow-up appointment for their infant’s hearing test.
Almost a fifth (19%) had not received any information about where to go for follow-up infant hearing tests.

A summary of telephone interviews completed within 15 months of birth to families whose infant did not pass inpatient screening mirrored many of the findings of the Maternal Exit Surveys:

Almost all the respondents indicated that they understood what to do next in terms of follow-up (93%) and completed their follow-up appointment (95%).
Two-thirds of respondents (62%) reported the hospital or doctor’s office made the follow-up appointment; another third (31%) received a list of audiologists.
More than half of respondents indicated that no one had called (57%) or sent them a letter (62%) to remind them about their follow-up appointment.
Nearly three quarters of respondents (73%) had an appointment for a follow-up evaluation by 2 weeks post-discharge from the hospital.

The majority of the respondents (85%) whose infant had not passed the follow-up evaluation had undergone further diagnostic evaluation.

The RTI survey information will be interwoven throughout the activities and strategies of this project. Reducing loss to follow-up for infants failing to pass newborn hearing screening will be addressed through the quality improvement activities as a collaborative effort involving a wide-range of agencies and groups. This project brings together the Utah Newborn Hearing Screening Advisory Committee (NBHS), the National Center for Hearing Assessment and Management (NCHAM), the American Academy of Pediatrics (AAP) EHDI Chapter Champion, the Utah Collaborative Medical Home Project, the Utah Department of Health (UDOH), the Utah Baby Watch Early Intervention Program (BW/EI), the Parent/Infant Program (PIP) through the Utah State School for the Deaf, the Department of Health’s Children with Special Health Care Needs (CSHCN) Clinics, the Intermountain Pediatric Society (of the AAP), Primary Children’s Medical Center, the University of Utah Medical Center Department of Pediatrics, the Utah Chapter of Family Voices, and various community partners to implement, evaluate, and monitor the effectiveness of these strategies in creating sustainable systems change. (Please see Attachment 7 for Letters of Support.