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. 2025 Apr 1;21(4):619-625.
doi: 10.5664/jcsm.11452.

Adults with Down syndrome and obstructive sleep apnea treated with hypoglossal nerve stimulation

Phillip Huyett  1 , Stephanie L Santoro  2   3 , Nicolas M Oreskovic  2   3 , Brian G Skotko  2   3
Affiliations

Adults with Down syndrome and obstructive sleep apnea treated with hypoglossal nerve stimulation

Phillip Huyett et al. J Clin Sleep Med. .

Abstract

Study objectives: We aimed to examine the feasibility, adherence to therapy, and efficacy of hypoglossal nerve stimulation in adults with Down syndrome and obstructive sleep apnea.

Methods: Adults patients with Down syndrome who met criteria for hypoglossal nerve stimulation were prospectively enrolled. Objective adherence was extracted from a cloud-based compliance database. Preoperative sleep studies were compared to follow-up testing performed no sooner than 3 months after device activation.

Results: Eleven adults with Down syndrome underwent implantation of hypoglossal nerve stimulation between May 2021 and July 2024. Median age was 27 years (interquartile range 26, 33), body mass index 28.5 kg/m2 (26.5, 32.4), 27% were female, and patients had severe obstructive sleep apnea (apnea-hypopnea index 40 events/h, 28.4, 42.9). All patients were successfully implanted on an outpatient basis with no postoperative complications or readmissions and activated on schedule at 1 month after surgery. Adherence data show nightly usage longer than 4 hours was 100% and 96% of nights and a median of 9.2 and 8.5 hours/night in the first 30 and 90 days, respectively. Seven patients have undergone follow-up testing and the median entire-night apnea-hypopnea index was reduced by 76%. All patients experienced a > 50% decrease in apnea-hypopnea index and to less than 15 events/h. Median time spent below 88% improved from 2.0% (0.3, 5.0) to 0.2% (0, 0.6), and oxygenation nadir improved from 79.0% (75.5, 85) to 88.0% (86.5, 91).

Conclusions: In this small initial cohort, hypoglossal nerve stimulation appears to be a safe, well-tolerated, and efficacious treatment option for adults with Down syndrome with moderate-to-severe obstructive sleep apnea and positive airway pressure therapy intolerance.

Citation: Huyett P, Santoro SL, Oreskovic NM, Skotko BG. Adults with Down syndrome and obstructive sleep apnea treated with hypoglossal nerve stimulation. J Clin Sleep Med. 2025;21(4):619-625.

Keywords: Down syndrome; hypoglossal nerve stimulation; obstructive sleep apnea.

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Conflict of interest statement

All authors have reviewed and approved the manuscript. Phillip Huyett reports research support from Inspire Medical Systems and Nyxoah and is an educational consultant for Inspire Medical Systems. Dr. Skotko occasionally consults on the topic of Down syndrome through Gerson Lehrman Group. He receives remuneration from Down syndrome non-profit organizations for speaking engagements and associated travel expenses. In the past 2 years, Dr. Skotko received annual royalties from Woodbine House, Inc., for the publication of his book Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. Within the past 2 years, he has received research funding from AC Immune and LuMind IDSC Down Syndrome Foundation to conduct clinical trials for people with Down syndrome. Dr. Skotko is occasionally asked to serve as an expert witness for legal cases where Down syndrome is discussed. Dr. Skotko serves in an unpaid capacity on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress and the Professional Advisory Committee for the National Center for Prenatal and Postnatal Down Syndrome Resources. Dr. Skotko has a sister with Down syndrome. The other authors report no conflicts of interest.

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