611 Sleep Disorders in a Longitudinal Community Cohort of Children with Down Syndrome

Abstract

Introduction: Obstructive sleep apnea (OSA) affects 50-79% of children with Down Syndrome (CDS) prompting the development of guidelines to increase early detection of OSA. Cross-sectional survey based data shows that CDS have higher rates of bedtime resistance, sleep anxiety, night waking and parasomnias, which are also underrecognized. However, due to increased survival of CDS it may be that OSA treated in childhood returns or worsens, or that CDS may develop other sleep disorders as their life experience and exposure to comorbidities expands. Little is known about sleep disorders across the life span of CDS and screening guidelines leave a gap beyond early childhood. We determined to enhance understanding of respiratory and non-respiratory sleep disorders in a community population of CDS. Methods: A retrospective population based observational study of CDS born between 1995-2011 was performed using the Rochester Epidemiology Project database. Medical records from all encounters through July 2020 were reviewed to identify sleep disorders. Sleep diagnoses, sleep test results, and treatments aimed at sleep disorders were recorded. Results: 94 CDS were identified with 85 providing consent for research. 54 out of 85 individuals were diagnosed with OSA with 26 diagnosed prior to age 4 and 25 undergoing polysomnography prior to treatment. 26 individuals underwent polysomnography following surgery of which 16 continued to have clinically significant OSA requiring further treatment with secondary surgery, CPAP or anti-inflammatory therapy. Other sleep disorders observed included insomnia (n=16), restless leg syndrome (n=7), periodic limb movement disorder (n=10), idiopathic hypersomnia (n=1), nightmares (n=1), nocturnal enuresis (n=1), bruxism (n=1) and delayed sleep phase disorder (n=1). Most non-OSA sleep disorders were diagnosed during OSA evaluation by sleep medicine providers. However, many children were on melatonin without a formal sleep disorder diagnosis. Conclusion: Both OSA and other sleep disorders remain underdiagnosed in CDS. This may be due to lack of validated screening tools that can be administered at the primary care level. Screening recommendations should consider the longitudinal nature of OSA in CDS and the presence of non-respiratory sleep disorders. Adenotonsillectomy is not as effective in CDS and postsurgical polysomnography is warranted along with long term follow-up to assess for further treatment needs.