AWAKE Sleep Apnea Initiative 2018: Raising Our Voices for Progress in Treatment and Care
June 8th, 2018 was a milestone day for the sleep apnea community. For the first time, patients and caregivers got to talk directly with representatives from the Food and Drug Administration (FDA) about what it’s like to live with sleep apnea. Eighty-three people – including patients, caregivers, FDA representatives, doctors, and medical equipment vendors – attended the American Sleep Apnea Association (ASAA) patient-focused AWAKE Sleep Apnea Initiative, held in College Park, Maryland. Another 386 people watched the event live via web streaming.
The event was all about presenting patient experiences of sleep apnea. Throughout the day, ASAA staff presented the results of our AWAKE Sleep Apnea Patient and Caregiver Survey, which summarized the experiences of over 5,600 sleep apnea patients and caregivers. The presentation was enhanced by two panels of patients who shared details of their sleep apnea stories and joined in discussion with the audience.
The report and panels covered topics such as sleep apnea symptoms, the diagnostic journey, and successes and barriers to effective treatment. Patients also had one-on-one interviews with ASAA staff to tell their stories in detail, and had their portraits taken. You can read the full report here, or view the portraits and interviews below. :
Below is a short summary of the reports most important findings.
Top 10 most common symptoms of untreated sleep apnea (in order of prevalence):
- Daytime sleepiness
- Un-refreshing sleep
- Loud snoring
- Dry mouth in morning
- Cognitive difficulties
- Depressed mood
- Awakening with breath-holding
- Frequent nighttime limb movements
Patients’ top concerns about living with untreated sleep apnea
- 53% were worried about long term health impacts
- 48% were disturbed by sleep apnea’s effects on their physical or mental performance
- 40% said sleep apnea negatively impacted their daily activities
- 23% said sleep apnea negatively impacted their relationships and well-being
Common Co-Occurring Disorders
- 45% of respondents have high blood pressure, much higher than the estimated U.S. prevalence of 33%.
- 30% of respondents have Gastroesophageal Reflux Disease (GERD), a rate much higher than the estimated U.S. prevalence of 18%.
- 20% of respondents have diabetes – more than twice the estimated U.S. prevalence of 9%!
- 15% of respondents have major depression – more than twice the estimated U.S. prevalence of 6-7%.
Barriers to Diagnosis
Many panelists discussed their journey to diagnosis, and reported many factors that complicated or delayed diagnosis, including:
- Patients were unaware of sleep apnea and its symptoms, attributed symptoms to other disorders or circumstances, and didn’t seek treatment.
- Doctors were under-educated on sleep apnea and didn’t test for it when patients reported symptoms, or symptoms were misdiagnosed as another condition.
- Patients didn’t fit the typical stereotype of a sleep apnea patient (older, male, overweight), and so thought that they couldn’t have the condition.
- Patients didn’t want to be diagnosed because they didn’t want to use PAP treatment.
- Patients worried about lack of insurance, high co-pays and/or deductibles, or insurance coverage of a sleep study or PAP machine.
- Patients lacked access to sleep clinics, or had to wait to get into a sleep clinic.
Most Common Treatments
- 69% of respondents were currently using a positive airway pressure machine (CPAP, APAP, BiPAP), while 12% had used one in the past but not anymore.
- Seven percent of respondents were using an oral appliance, down from 11% in the past.
- Of surgical interventions, tonsillectomy and/or adenoidectomy were most common at 9%, and 4% of respondents have had upper airway surgery.
Many people reported barriers to successfully using PAP treatment.
- 53% of survey respondents find them uncomfortable
- 48% said it’s inconvenient
- 34% have financial issues with PAP treatment
- 9% find using a PAP machine socially stigmatizing
People used a number of supportive strategies to help them manage their sleep apnea.
- 51% of respondents were working to lose weight
- 33% of patients used sleep positioning
- 29% used alcohol avoidance.
- Extended sleep times, increased caffeine, relieving nasal congestion, and meditation / mindfulness were also common strategies.
Treatment Impact on Symptom Severity
Prior to treatment, 44% of respondents reported moderate symptoms and 37% said their symptoms were severe. However, even after treatment, 29% of respondents still reported moderate symptoms and 5% still had severe symptoms. This indicates that while existing treatments help a lot of people, there are still people who need other options. People may also need help identifying other health conditions that can accompany sleep apnea.