Complimentary Author PDF: Not for Broad Dissemination LSHSS Research Note The Listening and Spoken Language Data Repository: Design and Project Overview Tamala S. Bradham,a Christopher Fonnesbeck,b Alice Toll,b and Barbara F. Hechtc Purpose: The purpose of the Listening and Spoken Language development. Since 2010, annual speech-language-hearing Data Repository (LSL-DR) was to address a critical need outcomes have been prospectively obtained by qualified for a systemwide outcome data–monitoring program clinicians and teachers across 48 programs in 4 countries. for the development of listening and spoken language Results: The LSL-DR has been successfully implemented, skills in highly specialized educational programs for bringing together the data collection efforts of these children with hearing loss highlighted in Goal 3b of the programs to create a large and diverse data repository of 2007 Joint Committee on Infant Hearing position statement 5,748 children with hearing loss. supplement. Conclusion: Due to the size and diversity of the population, Method: The LSL-DR is a multicenter, international data the range of assessments entered, and the demographic repository for recording and tracking the demographics and information collected, the LSL-DR will provide an unparalleled longitudinal outcomes achieved by children who have hearing opportunity to examine the factors that influence the loss who are enrolled in private, specialized programs development of listening in spoken language in this focused on supporting listening and spoken language population. earing loss is considered a low incidence disability their families. In particular, JCIH recommendations em- under the Individuals with Disabilities Education phasized the need for appropriate access to services, utilizing H Act (2004), which, in turn, makes conducting and service providers with knowledge and skills on the basis of generalizing research a challenge. The U.S. Preventive Services current research, best practices, and proven models, and the Task Force further underscored this conclusion by reporting development of a data system to monitor outcomes (JCIH, significant limitations in study designs, small sample sizes, 2013). and convenience samples in previously published research Recognizing the need for systematic data collection in the areas of pediatric identification of hearing loss and and outcome monitoring of children with hearing loss who early intervention (Nelson, Bougatsos, & Nygren, 2008; are enrolled in highly specialized educational programs, U.S. Preventive Services Task Force, 2008). The Joint Com- OPTION Schools, Inc. (OPTION) created the Listening mittee on Infant Hearing (JCIH) has provided the current and Spoken Language Data Repository (LSL-DR) to state of science and best practice guidelines for infants and initiate and facilitate ongoing outcome data collection for toddlers at risk for or with identified hearing loss. In 2013, children from birth to elementary school. OPTION is an JCIH made 12 specific recommendations for early inter- international organization of private, not-for-profit schools vention services provided to children with hearing loss and and programs that provide listening and spoken language services and education for children with hearing loss and their families. The LSL-DR brings together the data collec- tion efforts of these schools and programs to create a large aVanderbilt University Medical Center, Quality, Safety, & Risk and diverse data repository that can serve as a resource for Prevention, Nashville, TN examining auditory, speech, and language outcome data bVanderbilt University Medical Center, Department of Biostatistics, and the factors that may influence those outcomes. The Nashville, TN purpose of this article is to provide an overview of the LSL- c Clarke Schools for Speech and Hearing, Boston, MA DR project by describing the project background, ethical Correspondence to Tamala S. Bradham: considerations, and population characteristics of the first [email protected] 5,748 children with hearing loss, from infancy to school age. Editor: Shelley Gray Associate Editor: Andrea Pittman Disclosure: OPTIONS Schools, Inc., has contracted with Vanderbilt University Received November 16, 2016 Medical Center to oversee the project and complete analyses. The contract provides Revision received February 5, 2017 financial support for .2 FTE effort of Dr. Bradham, .1 FTE effort of Dr. Fonnesbeck, Accepted August 10, 2017 and a graduate student stipend to Alice Toll. Dr. Hecht was the president of OPTION https://doi.org/10.1044/2017_LSHSS-16-0087 Schools, Inc., and has not received any monetary compensation for this project. 108 Language, Speech, and Hearing Services in Schools • Vol. 49 • 108–120 • January 2018 • Copyright © 2018 American Speech-Language-Hearing Association Complimentary Author PDF: Not for Broad Dissemination OPTION Schools and Programs Background pathology, occupational therapy, and/or music therapy are available at some programs, whereas others rely on out- ’ Founded in 1980, OPTION s mission is to advance side agencies and providers for such services. Funding for excellence in the listening and spoken language education OPTION programs also varies by location. Programs by providing services that assist schools and programs to receive financial support through their LEA, grants and increase their effectiveness, efficiency, and ability to teach contracts, tuition payments by families, endowments, and/ children to listen and talk. OPTION is committed to ensur- or philanthropic support. ing that children with hearing loss and their families have access to listening and spoken language education choices. OPTION is a coalition of programs that advances the listen- Data Repository Project Overview ing and spoken language education by Following the JCIH (2007) call to action, in 2008, • supporting and promoting educational options for the OPTION Executive Board approved the development of children; an international repository of demographic and assessment • measuring outcomes; data for children with hearing loss who are enrolled in OPTION educational programs that specialize in teaching • establishing and sharing best practices; and childrentouselisteningandspokenlanguage.AnOPTION • raising awareness through advocacy. task force was convened to review existing, peer-reviewed lit- OPTION membership eligibility requires that pro- erature on outcomes in children with hearing loss who are grams meet the following criteria: developing listening and spoken communication. Generaliz- ability of the current body of research was limited by small • Espousal of the philosophy of the listening and sample sizes, single-center design, and the absence of pre- spoken language education. dictive variables. In addition, much of the published re- • Operated programs for children with hearing loss search was descriptive by design. Based on this review, the in an exclusively listening and spoken language task force made recommendations on specific diagnostic in- environment. formation, demographic variables, and assessment data to characterize and prospectively track the development of • Approved, licensed, or accredited by a recognized children with hearing loss while enrolled in these programs. agency and have been in operation for at least The goals of the data repository project established by 3years. OPTION’s board and members were to • Sponsored by another OPTION program for • create and maintain a robust source of longitudinal membership. educational outcome data on children with hearing The children enrolled in these programs range from loss who are enrolled in specialized programs newborns to school-aged students; they have individualized designed to help children develop listening and education plans/individualized family service plans (IFSPs) spoken communication; developed through their Lead Early Intervention Agency/ • enrich a collaborative partnership with other similar Local Educational Agency (LEA) or private program; and programs, aimed at increasing the quality and application educational placement in an OPTION program was deter- of educational data for program improvement purposes, mined to be the least restrictive environment. For private highlighting effective practices, and maximizing child placement, programs provided the family with an IFSP or spoken language outcomes; and individualized service plan as outlined in the Individuals • conduct and translate research to inform decision with Disabilities Education Act (2004). Children remain in making and improve educational and therapeutic OPTION programs only as long as specialized services are service delivery for children with hearing loss and needed. Once children demonstrate readiness for partic- their families. ipation in an inclusive general education program and have met and sustained age-appropriate growth in spoken lan- OPTION, through a contract with an independent guage skills and preacademic/academic readiness, they are party, Vanderbilt University Medical Center (VUMC), transitioned to their LEA or private program of parental brings together the data collection efforts of these pro- choice (e.g., day care, local school). Children may leave grams to create a large and diverse data repository, the these member programs at any time for a variety of other LSL-DR, that serves as a resource for examining auditory, reasons as well, including, but not limited to, parental speech, and language outcome data and the factors that choice, relocation,