# Telehealth-delivered outcome measures for Spanish- and English-speaking people with Down syndrome

> **NIH NIH R21** · UNIVERSITY OF CALIFORNIA AT DAVIS · 2023 · $441,250

## Abstract

ABSTRACT
Down syndrome (DS) is the leading genetic cause of intellectual disability. Moreover, virtually all aspects of
cognitive and behavioral development show very slow rates of development relative to age expectations in
people with DS. Life expectancy for individuals with DS has increased in recent decades; however, DS is also
characterized by early aging-related declines and a high risk for Alzheimer’s Disease (AD). Thus, there is a
need in the DS field to develop treatments that accelerate development during childhood and beyond as well
as treatments that slow or prevent the inevitable declines associated with AD. Evaluating the efficacy of such
treatments, however, requires psychometrically adequate measures of change. The Expressive Language
Sampling-Narrative (ELS-N) procedure has been shown to be a psychometrically sound measure for tracking
expressive language growth with age or within treatment in children, adolescents, and young adults with DS.
There is also preliminary evidence that ELS-N is sensitive to some early signs of decline. However, ELS-N has
not been validated in older adults with DS; has not been evaluated for non-English speakers; and has been
tested only in a clinic-based, clinician-administered format. To make ELS-N accessible to a wider array of
diverse participants, we have developed, and pilot tested, English and Spanish versions of ELS-N that can be
administered by caregivers to individuals with autism at home after telehealth-delivered training to caregivers.
In the proposed project, we further expand ELS-N by recruiting 60 verbal individuals with DS, ages 10 to 40
years, along with their caregivers, with equal numbers of English and Spanish speakers. Two ELS-N delivery
methods are proposed: (a) at-home, caregiver-implemented (after telehealth training) and (b) the “classic”
version of ELS-N (i.e., in-clinic, professional-administered). Each participant with DS will receive the two ELS-N
delivery methods. The specific aims of the project are: (1) examine the consistency of performance individuals
with DS across the two ELS-N delivery methods; (2) examine practice effects, test-retest reliability, and
construct validity for the variables derived from each ELS-N delivery method; and (3) examine the consistency
of performance and psychometric properties of the ELS-derived variables separately for ages 10-20, 21-30,
and 31-40 years, although this last aim is exploratory due to limited sample size. The aims will be addressed
for the sample as a whole and for each language group separately, thereby providing data relevant to future
studies involving either multi-language or single-language samples of participants. This project will expand the
array of outcome measures available for assessing treatment efficacy across the lifespan of individuals with
DS, increase the potential for broader representation in research and improve equitable access to care, and
identify potential linguistic indicators of both growth and decl...

## Key facts

- **NIH application ID:** 10730307
- **Project number:** 1R21HD109597-01A1
- **Recipient organization:** UNIVERSITY OF CALIFORNIA AT DAVIS
- **Principal Investigator:** LEONARD J. ABBEDUTO
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2023
- **Award amount:** $441,250
- **Award type:** 1
- **Project period:** 2023-09-20 → 2025-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10730307

## Citation

> US National Institutes of Health, RePORTER application 10730307, Telehealth-delivered outcome measures for Spanish- and English-speaking people with Down syndrome (1R21HD109597-01A1). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10730307. Licensed CC0.

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