Diagnosis and illness burden of excessive daytime sleepiness with obstructive sleep apnea in the United States

Background: Obstructive sleep apnea (OSA) with excessive daytime sleepiness (EDS) can impair quality of life (QOL) and may go undiagnosed. Objectives: To examine the diagnosis experience and impacts of EDS with OSA on QOL in the US. Methods: Focus groups in 3 US cities with 42 patients experiencing EDS with OSA; coded transcripts qualitatively analysed using adapted grounded theory approach. Results: Prior to diagnosis, 40% (n=17) of patients were aware of their EDS and 74% (n=31) were informed of their other OSA symptoms by a spouse/partner, family or friends. About half (n=22, 52%) waited an average of 11.4 (range 1-37) years to seek medical care for OSA; 32% (n=7/22) had thought their symptoms were normal rather than a sign of OSA. Reasons for seeking care were: input from a loved one (n=21, 50%); self-concern about symptoms (n=7, 17%); and impaired driving (n=5, 12%). Twenty-seven patients discussed referral pathways: 15/27 (56%) first saw a primary care physician and 12/27 (44%) a specialist. Although 74% (n=31) were currently on OSA treatment, the majority reported EDS impacts on physical functioning (n=40, 95%); daily life (n=39, 93%); cognition (n=38, 90%); social life (n=37, 88%); and work (n=29, 69%). Conclusions: In the US, OSA diagnosis is often delayed, with many patients unaware of the need to seek medical care. Following OSA diagnosis, EDS may continue to impair QOL. Future research should address diagnostic delays and unmet treatment needs for this population.