# Acceptability and Performance on In-Home Polysomnography in Youth with Down Syndrome

> **NIH NIH R21** · CHILDREN'S HOSP OF PHILADELPHIA · 2020 · $214,968

## Abstract

PROJECT SUMMARY/ABSTRACT
Obstructive sleep apnea syndrome (OSAS) is common in children and adults with Down Syndrome (DS), but
its impact upon quality of life, behavior, cognitive function, diabetes, and heart health are not known.
Significant residual OSAS is common after adenotonsillectomy and further highlights the need to better
delineate the contribution of OSAS to common morbidities and compromised quality of life in DS. A major
challenge to both clinical care and research related to OSAS is the testing required for diagnosis. In youth,
testing for OSAS requires an overnight stay in a sleep laboratory. Accessing centers with expertise in pediatric
OSAS and the care of children with intellectual disabilities is limited. Additionally, the testing is expensive, and
children may reject the testing due to behavior and sensory issues. The frequency of screening has yet to be
defined, an issue complicated by the relative inability of standard interviews and questionnaires to discern
OSAS risk. Our long-term objective is to study the relationship of OSAS and its treatment upon quality of life,
behavior, cognitive function, and heart health. To this end, this study proposes
 1) to test the acceptability and feasibility of home sleep apnea testing in adolescents with Down
Syndrome.
 2) to test for patient factors that contribute to the acceptability and feasibility of home sleep apnea testing
 in adolescents with Down Syndrome.
 3) to determine how well home apnea sleep testing diagnoses OSAS in adolescents with Down
Syndrome.
To accomplish these aims, youth age 10-20 years with DS will undergo home sleep apnea testing and
standard overnight sleep testing in a laboratory. Caregivers will be taught how to set-up the system and study
staff will be available to address problems. Caregivers and participants will complete questionnaires related to
how easily the sleep testing was performed at home, if they encountered any issues with set-up or with the
various components staying in place overnight, and quality of life. The home sleep apnea test results will be
compared with results from the standard in-lab sleep test. These preliminary studies will help determine if
home sleep apnea testing is feasible, if a subset of youth do better or worse with home sleep apnea testing,
and how well it performs as a diagnostic test. If using this test is feasible, acceptable, well-tolerated, and
performs well as a diagnostic test, a clinical trial will be pursued that tests the impact of OSAS treatment upon
quality of life, behavior, cognitive function, and heart health in adolescents with Down Syndrome.

## Key facts

- **NIH application ID:** 10022153
- **Project number:** 5R21HD101003-02
- **Recipient organization:** CHILDREN'S HOSP OF PHILADELPHIA
- **Principal Investigator:** ANDREA Bridget KELLY
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $214,968
- **Award type:** 5
- **Project period:** 2019-09-20 → 2023-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10022153

## Citation

> US National Institutes of Health, RePORTER application 10022153, Acceptability and Performance on In-Home Polysomnography in Youth with Down Syndrome (5R21HD101003-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10022153. Licensed CC0.

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