GRANT NARRATIVE
Understanding the Problem and Current Status Problem
Significant congenital hearing loss meets all the requirements for newborn screening: It is a condition with a higher prevalence than other conditions for which newborn screening has been provided historically, is not clinically apparent in newborns without specific screening, bears serious permanent consequences, and demonstrates measurable benefit from early intervention. The prevalence of permanent, bilateral hearing loss is estimated to be 1.2 to 5.7 per 1000 live births, about 7 to 40 Vermont births each year, and more with lesser degrees of hearing loss. Hearing screening targeted only to newborns with known risk factors consistently misses half of those with significant congenital hearing loss. Recent studies confirm that intervention needs to be initiated by six months, to give children the best chance for good language development. The clinical results of delayed diagnosis of deafness can include language and academic delays, and psychosocial difficulties.
Two very important national sources of support and motivation help states address the problem through have a statewide program of universal newborn hearing screening (UNHS) and early hearing detection and intervention (EHDI). The first is the support of the Maternal and Child Health Bureau through the dissemination of the monograph and website, "Early Identification of Hearing Loss: Implementing Universal Newborn Hearing Screening Programs" from the National Center for Hearing Assessment and Management (NCHAM) at Utah State University. This manual was helpful in persuading the Vermont Study Commission (see Current Status in Vermont, below) that UNHS was possible. Secondly, the publication of the Joint Committee on Infant Hearing (JCIH) "Year 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs," representing the consensus of member organizations in audiology, speech/language pathology, pediatrics, otolaryngology and the Council on Education of the Deaf, is a thorough, compelling and practical document on all aspects of EHDI, and is particularly helpful in its elucidation of roles and responsibilities of partners in the EHDI system, as well as in its definition of benchmarks and measurable quality indicators for every point along the path towards an EHDI system. This grant proposal adopts the JCIH recommendations as benchmarks and indicators for our Vermont tracking system.
Current Status in Vermont
Before UNHS, the average age at diagnosis, nationally, has been older than 2 years. In Vermont it still (1999) hovers around 5 1/2 years, based on surveys of VT audiologists, self- reports of their newly-diagnosed patients, suggesting the process of detecting hearing loss in children depends greatly on testing performed at school entry, and could be lowered by UNHS.
The Vermont Department of Health (VDH) has a statutory responsibility for general "early case-finding," under which VDH and birth hospitals partner to screen all newborns for metabolic disorders. Vermont does not have a statewide program of universal newborn hearing screening (UNHS) nor early hearing detection and intervention (EHDI). Barriers have included concerns about cost and nursery staffing needs, pediatrician concerns about false positive rates and the impact on families worrying about hearing loss, overall cost/benefit compared to other public health needs (e.g., a recent UVM faculty member paper on UNHS versus folic acid promotion), concerns about the high lost-to-follow-up rates at hospitals whose experiences have been published, concerns about the capacity to perform diagnostic audiometry on young infants, and concerns about the capacity to prescribe appropriate amplification for infants.
Nevertheless, in many ways Vermont is poised to begin a statewide program of EHDI. The 1999 VT legislature directed the Department of Health to establish a study commission to report on what it would take to implement statewide UNHS. The state's Children with Special Health Needs director chaired the commission which recommended encouraging VT birth hospitals to begin UNHS and establishing a central public health coordinating and assurance function. The CDC Cooperative Agreement will support this central function of assurance and tracking.
Secondly, statewide, outpatient hearing screening, using OAE and tympanometry, is available through the Hearing Outreach Project (HOP), at 13 sites around the state. HOP is a program of itinerant clinics, staffed by a pediatric audiologist, managed by the Children with Special Health Needs (CSHN) Title V program, and collaboratively funded by the VT Association of Hospitals and Health Systems, Fletcher Allen Health Care, the VT Department of Education, and the Department of Health. HOP was envisioned in 1993 by the CSHN Hearing and Communications Advisory Council, a body comprised of parents of children with hearing loss, adult advocates, primary and specialty care providers, and special educators. Although HOP began as a program of screening targeted to young children at risk of hearing loss, in the absence of UNHS, a number primary care practices and two hospitals are referring all their newborns for outpatient screening and follow-up. Through the support of the Health Department MCH statistician, HOP has a patient management information system, an MS Access application, to assist in the tracking of young children referred to HOP. Expansion and/or linkage to HOP's IS system will form an important element of this proposal (see below).
However, it is impractical for HOP to function as a universal source of screening for all newborns, for two reasons. First, as currently staffed, HOP is able to see about 1500 children a year. Secondly, beginning the first step of screening on an outpatient basis misses a unique opportunity to "capture" nearly all newborns while inpatients; we know from published studies that the outpatient follow-up rate for infants who do not pass their first screen is sometimes only 50%. To achieve universal screening would require an extraordinary public health outreach effort, and even then often would not achieve screening within the recommended time limits
Thirdly, even without a legislative mandate, several VT birth hospitals are beginning, or planning, UNHS in their nurseries. Two (of thirteen) community hospitals are performing screening in their nurseries, six of whom are in early to advanced stages of planning (two of whom have purchased equipment and two of whom are screening their NICU infants). Southwestern Vermont Medical Center (Bennington, VT) began screening all its newborns (345 births in 1998) with ABR. North Country Hospital (Newport; 215 births in 1998) began screening with ABR in January, 2000. Porter Medical Center (Middlebury; 241 births) and Northwestern Medical Center (St. Albans; 440 births) have purchased screening equipment. Northeastern Medical Center (St. Johnsbury; 273 births) and Rutland Regional Medical Center (592 births) are actively planning for UNHS. Springfield Hospital (192 births) and Northeastern currently refer all their newborns to HOP for outpatient screening, pending the initiation of their own hospital-based screening. Dartmouth Hitchcock Medical Center, a "Vermont" tertiary care center in Lebanon, NH, (389 Vermont resident births) has announced plans to begin UNHS this summer. Fletcher Allen Health Care, the University of Vermont College of Medicine hospital in Burlington (2,159 births) has started preliminary discussions to gather internal endorsement for UNHS. At this writing, both Dartmouth and FAHC screen all their NICU high-risk babies for hearing loss with ABR screening. There are, therefore, currently 6 remaining Vermont birth hospitals with no known plans for initiating UNHS. In addition, about 100 infants per year are born at home, and 300 infants born out of state at hospitals other than Dartmouth.
However, in calendar year 1999, with 6569 births, only 9.4% of infants were screened for hearing loss before hospital discharge; this group was comprised of all infants born at SVMC, and NICU babies screened at FAHC and Dartmouth. Even these hospitals were unable to report (for the purposes of Title V reporting) accurately on the numbers of VT resident babies screened, as all three deliver/screen babies from other states as well.
Currently, Vermont must turn to her two tertiary care centers to provide the diagnostic audiometry for very young infants. Although some community-based audiologists have diagnostic ABR capability, the requirement for sedation for the youngest infants means that their ABR can be performed most safely in the hospital setting. With the goal of confirmatory diagnosis by 3 months of age, at this time diagnostic options with anesthesiology support are limited to Dartmouth and FAHC only.
Since 1993, Vermont has had a statewide early intervention system through Part C, IDEA. The Family, Infant and Toddler Project (FITP) serves over 700 children, birth to age three (about 3% of the population). Children identified with hearing loss are categorically eligible for services. FITP enhances services for children with hearing loss through its funding of the Vermont Parent Infant Program, a statewide program of assessment, home-based specialized instruction, and parent support, for infants who are deaf or hard of hearing. From 12-2-98 to 12-1-99, 11 enrolled children (1.4% of 775) were eligible because of hearing loss. An unknown number of children had hearing loss in addition to other chronic conditions. FITP is another statewide source of child find, although, like HOP, it is targeted rather than universal. FITP also has a management information system (like HOP, also an MS Access application) for young children enrolled in its programs. This database will also be an element for linkage in this Cooperative Agreement proposal.
Financial access to medical care related to hearing loss appears quite good. Vermont has a very high level of health care coverage for children, reported at >95%. In large measure, this level of coverage is due to the inclusion in Medicaid eligibility of children (to age 18) whose families have incomes up to 300% federal poverty level, or about $51,000 for a family of four. As VT primary care physicians serving children universally "take Medicaid", children have excellent access to primary care "medical homes", as well as to a very broad set of benefits, including services needed by children who have hearing loss. In addition, CSHN fills some of the gaps through its Hearing Aid Purchase program and its Cost Share program.
Three immediate opportunities for linkage with existing tracking and surveillance include the Hearing Outreach Project, the Family, Infant and Toddler Project (both described above) and the statewide universal newborn metabolic (bloodspot) screening program. The Vermont Department of Health has many years of experience managing the current system of metabolic screening, with many parallels to an EHDI system, collaborative efforts between hospitals and the central system program director, timely communication among hospitals, the central program, and primary care physicians about those newborns needing immediate follow-up, public health outreach when needed to assure that no newborn is lost to follow-up, informed consent procedures (written informed dissent), referral to intervention and treatment with the support of CSHN in the areas of care coordination and financial assistance, analysis of screening data with respect to quality assurance measures (such as inadequate samples or delays in submission), with feedback and technical assistance to screening hospitals, and system oversight by the Newborn Screening Advisory Committee. One of the goals of this proposal is to link/integrate the tracking/assurance systems of EHDI and bloodspot screening.
Finally, EHDI tracking will be linked to birth certificates and incorporated into the Vermont Department of Health's emerging comprehensive client management information system, SPHINX. Although in its earliest stages, SPHINX's development is "on a fast track".
Goals and Objectives
The ultimate mission of the proposed project is to maximize the development of all children who are deaf or hard of hearing, by assuring the earliest possible detection of hearing loss, confirmatory diagnosis, and intervention. Each of these three system components is represented by goals and specific objectives of the project. In addition, the tracking of children at risk for later onset hearing loss, and a unifying database/tracking system are also represented by goals and specific objectives (Note: For all goals and objectives, "screening" refers to one or more of the recommended physiologic methods such as ABR or OAE.)
Because the project is targeted to all newborns, it is inclusive of all genders, ethnic and racial groups represented among Vermont resident births.
Early Detection Goals and Objectives:
Early Detection Goal 1: Screening, re-screening, and referral by one month of age. All Vermont infants will be screened, and if necessary, re-screened by one month of age, either before discharge from their birth hospital or by an outpatient screening that "captures" infants discharged without screening or born at home.
Objective 1.1: The project will collaborate with hospitals which are performing screening or are planning to initiate screening to assure that a high percentage of inborn infants are screened before discharge.
Objective 1.2: The project will collaborate with hospitals which are performing screening or are planning to initiate screening to assure that infants who are not screened as inpatients will be screened by one month of age.
Objective 1.3 The project will collaborate with lay and nurse midwives performing home births, to promote screening of home birthed infants by one month of age.
Objective 1.4 The project will collaborate with hospitals which are performing screening or are planning to initiate screening to assure that either their inpatient protocols include the step of rescreening infants who did not pass their initial screening and/or referring such infants for a second screening as outpatients, within one month of birth. The JCIH target is that only 4 percent of infants screened should warrant referral for further diagnostic testing. See also Central Assurance and Tracking Integration Goals and Objectives, below.
Early Detection Goal 2: Universal hospital participation in UNHS and EHDI. By the end of the project, all Vermont birth hospitals will participate in EHDI, beginning with UNHS in their nurseries.
Objective 2.1 In the first year, at least two new hospitals will initiate UNHS and will collaborate with this project.
Timely Diagnosis Goals and Objectives:
Timely Diagnosis Goal 3: Diagnostic confirmation by three months of age. All infants who did not pass their screenings (initial and second) will receive appropriate audiologic diagnostic services, and those found to have hearing loss, medical evaluation, including primary care, otolaryngology, and when indicated, other pediatric specialty such as genetics, by 3 months of age. See also Central Assurance and Tracking Integration Goals and Objectives.
Objective 3.1: The project will promote the JCIH standards and timeframes for diagnosis, and will encourage referral of infants not passing their screening, to HOP to facilitate and track diagnostic confirmation.
Early Intervention Goals and Objectives:
Early Intervention Goal 4. Entry into effective early intervention by 6 months of age. All infants who are deaf or hard of hearing will enter into effective early intervention by 6 months of age. See also Central Assurance and Tracking Integration Goals and Objectives.
Objective 4.1: The project will promote the JCIH standards and timeframes for entry into early intervention and will encourage referral of infants with confirmed hearing loss to HOP to facilitate and track early intervention.
Late Onset or Progressive Hearing Loss Goals and Objectives:
Late Onset or Progressive Hearing Loss Goal 5: Monitoring of children known to be at risk. All children known or suspected to be at risk for hearing loss will be monitored closely, and diagnosed and referred for intervention promptly. See also Central Assurance and Tracking Integration Goals and Objectives.
Objective 5.1 The project, in collaboration with its NICU partners, will review and revise existing protocols for the ongoing monitoring of infants known to be at risk for later onset hearing loss, in accordance with the JCIH recommended indicators for neonates or infants.
Objective 5.2 The project will develop and disseminate a professional awareness message promoting understanding and recognition of the risk factors for later onset hearing loss (5.1, above) and the recommended protocols for monitoring, and timely diagnosis and intervention, in accordance with JCIH guidance.
Central Assurance and Tracking Integration Goals and Objectives:
Central Assurance and Tracking Integration Goal 6: Public health assurance through clinical partnership of hospitals and HOP. The state's public health responsibility for assurance will be met clinically through a partnership of hospital-based screening and public health follow-up through the HOP program.
Objective 6.1: The Hearing Outreach Project will be strengthened to perform the follow-up function for any infant screened in a hospital and needing further evaluation, to perform the initial screening and follow-up function for any infant not screened, and to perform the monitoring function for infants and young children at risk of later onset or progressive hearing loss up to age three.
Central Assurance and Tracking Integration Goal 7: All infants will have their hearing screening, diagnosis and intervention status tracked and assured through a central tracking system All infants will have their hearing screening, diagnosis and intervention status tracked and assured through a central tracking system, which combines non-personally identifiable data from hospitals and child-specific data on infants whose hearing detection and intervention care is provided through HOP.
Objective 7.1 The project will establish agreements with screening hospitals to collect, centrally at the project level, non-personally-identifiable information on the infants for whom the hospitals have performed one or more screening and follow-up steps. The information will be keyed to the JCIH Benchmarks and Associated Quality Indicators. (These indicators, while not establishing a management information file for each infant, nor linked to the birth certificates, still provide a comprehensive picture of the quality, timeliness and thoroughness of each hospital's screening (and follow-up) process.
Objective 7.2 The project will strengthen the individual case tracking capability of HOP; when infants are referred to HOP at any point of the sequence (e.g. home-birthed infants or infants discharged without screening referred to HOP for initial screening; infants referred for coordination of their diagnostic testing), their pre-referral data will become part of their individual patient record and HOP database. Their course of care, once enrolled in HOP, will also be part of their continuing record/database.
Objective 7.3: The project will develop a method to integrate the non-personally identifiable tracking information reported by hospitals, and the individual (and confidential) tracking information from HOP, into an aggregate whole, which, when analyzed, describes the status of the EHDI system according to JCIH Benchmarks and Indicators, indicates areas needing improvement, and which can be used to suggest improvement strategies.
Central Assurance and Tracking Integration Goal 8: Project integration with birth certificates. By the end of the second project year, the tracking information system will be linked with birth certificates, with the same confidentiality principles as the current Newborn Metabolic screening program. At that time, the aggregate-only system will become congruent with the HOP tracking system, and linkage at all levels can be completed.
Objective 8.1: Specifying strategies for the second year will occur during the first year.
Central Assurance and Tracking Integration Goal 9: Project integration with SPHINX, Vermont Department of Health's emerging comprehensive client management information system.
Objective 9.1: Within VDH, project planning will be integrated into the planning for SPHINX.
Central Assurance and Tracking Integration Goal 10: Project integration with Newborn Metabolic (bloodspot) screening The Vermont Newborn Metabolic (i.e. bloodspot) Screening assurance and tracking information system will be integrated with the state's EHDI assurance and tracking information system.
Objective10.1: In the design of the EHDI tracking system the specific data tracking needs of the Metabolic Screening program will be examined; selection and/or design of EHDI tracking system will specifically be compatible with the Metabolic program.
Central Assurance and Tracking Integration: Goal 11: Project integration with other tracking systems. The project will be integrated with other tracking systems for children with special health needs, beginning with Part C of IDEA, the Family, Infant and Toddler Project.
Objective 11.1: Over the course of the project, tracking integration will be achieved with FITP.
Description of Program and Methodology
The project proposes to address Vermont's relatively high average age-at-diagnosis for children with hearing loss and the lack of a statewide early hearing detection and intervention system. The project will result in statewide hospital participation in newborn hearing screening and a statewide follow-up system to assure that infants needing confirmatory diagnosis/medical evaluation and a comprehensive range of early intervention services, will receive them within a timeframe and with the quality recommended by the Joint Committee on Infant Hearing and others. The project will establish a system of surveillance and tracking that will serve both individual child management needs and system assurance and improvement needs. The system will be linked with other tracking systems for children with special health needs. Project activities will support screening to meet the goals of screening all infants, re-screening infants who do not pass by one month of age, referring infants (target: 4%) needing diagnosis, assuring diagnosis by 3 months, and assuring appropriate early intervention by 6 months, and monitoring infants at risk of later onset hearing loss. Activities will include outreach information and consultation, development of agreements for referrals, agreements for reporting of screening results, provision of comprehensive outpatient follow-up. A management information system will be developed to support individual tracking and aggregate data reflecting institution and program performance. The tracking system will be linked to the Health Department's emerging client information system, the Part C system, and the statewide newborn metabolic (bloodspot) screening system, in stepwise fashion, over the course of the project.
Early Detection Goal 1: Screening, re-screening, and referral by one month of age
Objective 1.1: Collaborate to assure high percentage of infants is screened. The JCIH target is that "within 6 months of program initiation, hospitals?screen a minimum of 95% of infants during their birth admission or before one month of age."
Activity 1.1.1: By Jan. 2001 and ongoing The project manager will interview the hearing screening managers of each hospital performing UNHS to identify their protocols for screening, their tracking methods, and their protocols for follow-up/assurance that no infant is lost to follow-up.
Activity 1.1.2: By Jan. 2001 and ongoing The project manager will share, with each hearing screening manager, the JCIH policy and recommendations, the guidance available through the National Center for Hearing Assessment and Management, and research literature related to capture of a high percentage of newborns for screening.
Activity 1.1.3: By Jan. 2001 and ongoing The project manager will collaborate with the Newborn Metabolic (bloodspot) screening director to compare in detail methods of support and encouragement for hospital screening programs, current metabolic tracking methods, and methods of quality assurance feedback to hospitals.
Activity 1.1.4: By April 2001 and ongoing The project manager will coordinate hospital site visits with the Newborn Metabolic screening director when those include visits with the clinical (rather than laboratory) hospital screening staff.
Objective 1.2 Assure screening by one month for missed infants
Activity 1.2.1: By Jan. 2001 and ongoing In outreach to hospital hearing screening managers, the project manager will specifically address each hospital's protocol with respect to missed infants, pursuing an agreement to refer missed infants to HOP (with the agreement that HOP will report back to hospitals on the success of outpatient screening, with parent consent.
Objective 1.3 Promote screening for home-birthed infants
Activity 1.3.1 By April 2001 and ongoing The project manager will meet with lay and nurse midwives to explain the benefits of early detection of hearing loss and early intervention, and the state's resources supporting follow-up. A specific focus will be the value of informed consent and parent information about early hearing behavior and risk factors. Agreements will be sought with midwives to inform parents about the benefits of screening, and to refer infants to HOP for screening. To the extent possible, this outreach to midwives will be collaborative with outreach by the Metabolic screening program.
Objective 1.4 Promote two-step screening to reduce referrals and false positives. The JCIH target is that only 4 percent of infants screened should warrant referral for further diagnostic testing.
Activity 1.4.1 By Jan. 2001 and ongoing The project manager and the HOP audiologist will specifically address with the hospital hearing screening managers the benefits of a re-screening for infants who do not pass the first screen. The desired outcome of the outreach is an agreement to complete re-screening before discharge, or to refer infants needing re-screening to HOP (with the agreement that HOP will report back to hospitals on the success of outpatient screening, with parent consent.
Early Detection Goal 2: Universal hospital participation in UNHS and EHDI
Objective 2.1 Two new UNHS hospitals in first project year
Activity 2.1.1: By April 2001 and ongoing The project manager will organize and deliver outreach presentations to hospital professional staff and decision-makers, at the six hospitals not currently planning screening, about the rationale for implementing UNHS, and technical assistance and resources available. Presentations will include updates on the successes of hospitals already performing UNHS.
Activity 2.1.2: By April 2001 and ongoing The project audiologist will offer and provide technical assistance to hospitals moving towards UNHS, particularly on selection of equipment and development of screening and follow-up protocols.
Activity 2.1.3: By July 2001 and ongoing The project staff will meet with hospital hearing screening managers to help establish agreements and procedures for reporting non-identified screening information to the project, agreements and procedures for referral to HOP and for feedback to hospitals on the success of their efforts. See Central Assurance and Tracking Integration Goals and Objectives below.
Activity 2.1.4: By Jan. 2001 The project staff will establish a network of support and mutual problem-solving for hospital hearing screening managers.
Timely Diagnosis Goal 3: Diagnostic confirmation by three months of age
See also Central Assurance and Tracking Integration Goals and Objectives.
Objective 3.1: Promote diagnosis standards and timeframes, referral to HOP for facilitation and tracking
Activity 3.1.1 By Jan. 2001 and ongoing The project manager and the project audiologist will meet with hospital hearing screening managers to disseminate the JCIH guidance, to provide information about the currently limited sources of appropriate diagnostic testing for very young infants, and to encourage referral into HOP for care coordination for diagnostic testing and tracking.
Early Intervention Goal 4. Entry into effective early intervention by 6 months of age. At least four components comprise effective early intervention for infants who are deaf or hard of hearing: (1) enrollment in the Part C IDEA early intervention program and its specific program for infants with hearing loss; (2) audiologic habilitation, typically including personal amplification or sensory devices; and (3) family support services. See also Central Assurance and Tracking Integration Goals and Objectives.
Objective 4.1: Promote early intervention entry standards and timeframes; referral to HOP for facilitation and tracking.
Activity 4.1.1: By Jan. 2001 and ongoing The project manager and the staff of the regional Part C early intervention program (FITP, Family, Infant and Toddler Project) will meet with hospital hearing screening managers to disseminate JCIH guidance, to provide information about the appropriate early intervention components for infants with hearing loss, and to encourage referral into HOP for care coordination and tracking.
Activity 4.1.2 By Jan. 2001 and ongoing The project audiologist will make outreach contacts to audiologists who might be providing audiologic intervention, to encourage collaboration with the EHDI project, referrals to CSHN Hearing Programs and Part C Early Intervention program for infants with confirmed hearing loss, and to provide updated information about resources for infants who are deaf or hard of hearing. Part C will help families make connections with family support services.
Late Onset or Progressive Hearing Loss Goal 5: Monitoring of children known to be at risk. See also Central Assurance and Tracking Integration Goals and Objectives.
Objective 5.1 Review and revise NICU protocols for monitoring of hearing.
Activity 5.1.1: By July 2001 The project audiologist will facilitate a group to review and revise NICU protocols at FAHC.
Objective 5.2 Improve professional awareness of risk factors.
Activity 5.2.1: By July 2001 The project manager will update the information from the last outreach education mailing about risk factors for hearing loss, to incorporate the JCIH recommendations.
Central Assurance and Tracking Integration Goal 6: Public health assurance through clinical partnership of hospitals and HOP.
Objective 6.1: Strengthen HOP as follow-up service and tracking system for UNHS.
Activity 6.1.1: By Jan. 2001 The project staff will assess the potential for HOP to add up to 650 newborn visits per year, or up to 10 % of annual births (to allow for a 4% refer rate, plus an over-refer rate in the initial years of hospitals' performing screening); at the same time, an anticipated decrease in referrals of older children who have never been screened.
Activity 6.1.2: By Jan 2001 The project will add secretarial/data entry time to accommodate the increased historical data entry for newborns referred into HOP after their initial hospital screen.
Activity 6.1.3: By Jan. 2001 The project manager and the project audiologist will achieve agreements with diagnostic audiology providers to which HOP refers infants for diagnostic testing to assure that the information about diagnostic findings, timeliness, and missed or lost referrals is reported to HOP when HOP is the referral source. HOP will request family releases to enable the audiologist's diagnostic information to be reported to HOP.
Activity 6.1.4 By April 2001 The project manager and the project audiologist will achieve agreements with the Part C IDEA program to which HOP refers infants for early intervention (evaluation, IFSP planning, early intervention services) to assure that the information about timely initiation of services is reported to HOP when HOP is the referral source, and reported without identifiers for other children. HOP will request family releases to
Other Activities: Already described (1.2.1, 1.3.1, 1.4.1, 2.1.3, 3.1.1, 4.1.1 ) are project activities to promote HOP as a "safety net" follow-up system for hospital screening.
Central Assurance and Tracking Integration Goal 7: All infants will have their hearing screening, diagnosis and intervention status tracked and assured through a central tracking system
Objective 7.1 Agreements with screening hospitals to report Benchmarks and Indicators
Activity 7.1.1 By Jan. 2001 The project staff will begin with the JCIH Benchmarks and Indicators, to develop a corresponding set of non-personally-identifiable reports to request from screening hospitals. These reports will supply institution-specific, and, in the aggregate, system-based, information about the performance of the EHDI system, at each step along the sequence, from initial screen, to entry into early intervention.
Activity 7.1.2 By April 2001 The project manager will facilitate meetings between the project, VDH, and hospital decision-makers, to promote agreements for information sharing, building upon the information which hospitals now report to CSHN in accordance with the annual Title V reporting.
Objective 7.2 Expand and strengthen HOP tracking database.
Activity 7.2.1 By Jan. 2001 The project statistician and the project information system consultant will examine the current HOP database to determine how best to incorporate pre-referral tracking information, so that the information is available for analysis of the population, but is still distinguishable from new information that occurs after referral. The challenge is to maintain/ improve the current MS Access database serving HOP, allowing it to remain specific to HOP as it provides direct audiologic services and case management, while incorporating information about screening which occurred in the nursery.
Activity 7.2.2 By April 2001 The project statistician and the project IS consultant will incorporate the data set developed in 7.1.1 above into the HOP database.
Objective 7.3: Integrate hospital tracking reports with HOP information
Activity 7.3.1 By April 2001 During the first year, the project steering committee will examine the potential of the existing HOP database, commercially and publicly available software serving a EHDI purpose and their utility for expansion and integration, and the option of designing an information system within Vermont.
Activity 7.3.2 By Sept. 2001 The data set developed in 7.1.1. and 7.2.2 will allow for a combined analysis of hospital reports and HOP patient information, to assess the status and quality of the EHDI system, provide site-specific information for quality improvement.
Central Assurance and Tracking Integration Goal 8: Project integration with birth certificates by end of year two.
Objective 8.1: By end of year one, goals and strategies will be specified.
Activity 8.1.1: Immediate and ongoing The project statistician will participate in any VDH discussions of modification of the birth certificate for any purposes.
Activity 8.1.2: Beginning Jan. 2001 The project steering committee will begin development of parallel strategies to promote screening hospital reporting of infant-specific screening data.
Central Assurance and Tracking Integration Goal 9: Project integration with SPHINX, Vermont Department of Health's emerging comprehensive client management information system.
Objective 9.1: Integrate EHDI project into SPHINX planning.
Activity 9.1.1 Immediate and ongoing The project information systems consultant will be included in the SPHINX planning team.
Central Assurance and Tracking Integration Goal 10: Project integration with Newborn Metabolic (bloodspot) screening.
Objective 10.1: Examine metabolic screening program data needs
Activity 10.1.1 By Jan. 2001 The project statistician and the project IS consultant will review the current tracking system with the Newborn Screening Program director, to find congruence and divergence in needs.
Activity 10.1.2 By Sept. 2001 The project staff will then expand/modify the EHDI tracking database (7.3.2) to accommodate and include metabolic screening information.
Central Assurance and Tracking Integration Goal 11: Project integration with other tracking systems.
Objective 11.1: Integrate with FITP
Activity 11.1.2: By July 2001 The project statistician and the project IS consultant will review the current FITP database, to find congruence and divergence in needs.
Activity 11.1.2: By Jan. 2002 The project staff will then expand/modify the EHDI tracking database to link it with the FITP database.
Evaluation Plan
A project steering committee, the working group guaranteeing the progress of the project, will meet monthly. It will be comprised of representatives from the two advisory councils (see Collaboration, below), the project manager, the project audiologist, the project statistician, the CSHN director, and the director of the Vermont Parent Infant Program, the statewide early intervention component specifically for infants with hearing loss. Its initial work will focus on the detailing of a timetable/workplan (presented more generally, above), and will develop the reports for the councils. As the workplan is detailed, monitoring project progress will also include the assessment of whether activities were accomplished on time.
Ultimately, the success of the project depends upon the tracking system's ability to answer the following questions, based significantly on the JCIH Benchmarks and Indicators:
- Percentage of infants screened during birth admission
- Percentage of infants screened before one month of age
- Percentage of infants who do not pass the birth admission screen
- Percentage of infants who do not pass the initial screens who are referred for audiologic/medical diagnosis
- Percentage of families who refuse hearing screening on birth admission
- Percentage of infants whose audiologic/medical evaluations are obtained by 3 months of age
- Percentage of infants with confirmed hearing loss referred for otologic evaluation
- Percentage of families who refuse audiologic/medical evaluation services
- Percentage of infants with confirmed hearing loss who who have a signed IFSP by 6 months of age
- Percentage of infants with hearing loss who begin appropriate use of amplification within one month of dx
- Percentage of families who refuse early intervention services
Collaborative Efforts
CSHN and HOP currently have two committees advising the programs on hearing management issues. The CSHN Hearing and Communications Advisory Council, a body comprised of parents of children with hearing loss, adult advocates, primary and specialty care providers, and special educators, has guided the transition of the CSHN Hearing program from an ENT/Otitis Media clinic to a comprehensive team-based consultation model, has surveyed audiologists to determine the average age at diagnosis of hearing loss in children, has proposed the HOP model to screen and find children at a younger age, and has spearheaded public and professional awareness about hearing loss risk factors. On the other hand, the HOP Advisory Council is comprised of representative administrators from Vermont hospitals and gives guidance to the expansion of HOP from pilot to statewide (now completed) and to its fiscal integrity. Both councils have an intense interest in an EHDI system; many members participated in the 1999 Study Commission and recommended an EHDI system to the legislature. The project will turn to both councils for guidance and will report to them at quarterly meetings on project progress.
Current collaborative efforts with MCH, CSHN, Part C of IDEA, metabolic screening, other early intervention service providers, and families and advocates, are described above in Current Status in Vermont, and Goals and Objectives, particularly the Early Intervention and the Central Assurance and Tracking Integration goals and objectives.
Staffing and Management System
The project will reside within the Children with Special Health Needs unit, in the Division of Health Improvement, Vermont Department of Health. CSHN is the Title V agency for services to children with special health care needs and as such, comprises direct service multidisciplinary clinics, enabling services such as care coordination, respite care, and financial assistance, population-based services such as HOP, and infrastructure building services, including extensive collaboration with other state, non-profit, private, and academic entities providing aspects of care for children with chronic conditions, and with parent support and advocacy organizations, principally Parent to Parent of Vermont. The CSHN director is a pediatrician with twenty years of experience in team-based care for children with special health care needs, five as director of multidisciplinary clinic in a tertiary care setting, and fifteen as director of the CSHN program (and its predecessor program).
The project will utilize the efforts of the project manager to initiate for the major component of collaboration with hospital screening programs; the project manager will also be responsible for the management of the Hearing Outreach Project, the clinic component providing public health follow-up/assurance. The project audiologist will provide technical consultation to hospitals in the selection of equipment and the establishment of protocols. The project statistician will provide analysis of current HOP and future hospital-based tracking data, in collaboration with clinical and public health interpretation. The project information systems consultant will contribute expertise toward the analysis of system requirements, both for the EHDI effort, linkage with SPHINX, and integration with newborn metabolic screening. The project secretary will assist with written products and data entry.
The project manager is a nurse with a masters in education, who has managed several clinical and administrative efforts within CSHN. For many years her focus has been children with hearing loss and their service needs. She created and continues to facilitate the CSHN Hearing and Communications Advisory Council. Since 1996 she has been the manager of the HOP program, overseeing its growth from a pilot to a statewide project. In this latter role, she has worked directly in a systems development role, collaborated with a variety of hospital administrators and clinicians, families, and Department of Education managers. She will continue her attention to HOP half-time, and manage this project also half-time.
The project audiologist is a pediatric audiologist currently serving HOP as clinician. She will continue her clinical duties under HOP, but will add considerable effort in the area of technical/clinical consultation and project oversight.
The project statistician has a masters in public health and has worked in the Health Department for three years in MCH and MCH-SSDI (State Systems Development Initiative). Together with support from the Health Department's Information Systems unit, he has developed a basic MS Access database to support the work of the HOP project.
The project will contract with an information systems development specialist to review the status of the existing HOP, FITP, and newborn bloodspot screening databases, review other state's in-house developed EHDI IS systems, review commercial programs such as Hi-Track and OZ for present utility and future ability to integrate, collaborate with the department IS program as they design SPHINX.
The project will also support the consultation time of the director of the Vermont Parent Infant Program, the statewide early intervention component specifically for infants with hearing loss, to address referral, collaboration and communication issues between the EHDI system and early intervention.
Finally, the project will support consultation time from families, through Parent to Parent of Vermont, an organization founded and run by parents, for parents of children with special health care needs, and a partner with CSHN through Title V for 13 years.
Organizational Structure and Facilities
As described in F, above, the project will be managed within CSHN. Its structural proximity to the Part C early intervention system and direct, care coordination and financial assistance resources of CSHN, and the existing Hearing Outreach Project, will facilitate its integration with those services and their tracking methods.
CSHN is part of the division of Health Improvement in the Department of Health; the division director is also the state MCH director. Other department divisions include Health Surveillance, encompassing Health Statistics; the division of administration oversees the department's information systems unit. The Health Department resides within the Agency of Human Services, whose Secretary is a member of the Governor's cabinet.
As a project within CSHN, it will have access to and be supported by the full resources of the unit, division and department.
Human Subjects Review
The proposed project does not involve research on human participants. Its clinical activities are those within the proper realm of hospital nursery care and clinical follow-up, and represent an expansion of current activities without any change in the nature of those activities. Informed consent procedures already in place will be maintained.
The proposed project also involves existing referral procedures and the privacy/confidentiality protections already in place whenever a child is referred from one program to another, e.g., from a hospital to HOP; from HOP to early intervention. Any sharing of personal clinical information with the project will involve parental consent.
The proposed project also involves the sharing of non-personally-identifiable aggregate information about screening procedures and their outcomes. If at any point in the project, the next step would appear to involve identifiable information, the agency's human subjects review process will be invoked.
|
