When Emma Cooksey was diagnosed with obstructive sleep apnea in 2008, the internet was still in its infancy, toddlerhood if we’re being generous. Following her diagnosis, her doctor promised to fix her up in no time, but Cooksey told Sleepopolis that it wasn’t smooth sailing — more like choppy waters. From minor issues like skin irritation to big issues like ill-fitting masks, Cooksey said, “I had every problem with CPAP you could possibly have.” What little information she could find on the internet came from chat rooms, forums, and the sheer determination to make it work.
Fast forward 15 years, and the voice behind the Sleep Apnea Stories podcast took it upon herself to create the resource she wished she had in the first days of life with a CPAP machine — a workbook filled with tools and solutions to give new CPAP users a better start to their therapy.
Of the book, aptly titled The 6-Week CPAP Solutions Workbook, Emma says, “The issues I’m addressing seem small, but uncomfortable masks, skin irritation, hair breakage, etc. are all the reasons patients abandon CPAP treatment.” Cooksey goes on to say that instead of throwing our hands up and despairing about CPAP adherence being so low, a better approach would be to share actual solutions.
CPAP Therapy Has a Notoriously Low Compliance Rate
And Cooksey isn’t wrong about people giving up before they start. While CPAP is known as the gold standard for treating obstructive sleep apnea, study after study shows that adherence is an issue for patients, and non-compliance is an ongoing challenge for doctors and clinicians.
One study showed that the 4-hour adherence rate during the first week of using the device was about 67%, and after three months, the adherence rate tumbled to 47%. (1) Another study showed that 50% of CPAP users discontinued using the machine within one year from the start of treatment, and 8 to 15% of OSA patients gave up on CPAP treatment after the first night. (2)
Peeling the onion back a bit further, there’s a litany of reasons for high non-compliance rates ranging from a lack of patient support to loud machines keeping bed partners up at night.
More specifically, typical reasons for CPAP non-compliance include (2):
- Nasal discomfort
- Airway dryness/dry mouth
- Claustrophobia
- Anxiety
- Inconvenience
- Frequent nighttime waking
- The inability to resolve machine malfunctions
- No post-sale support (1)
A New Resource for CPAP Support
While her book highlights many of the issues outlined above, Cooksey included a few other problems that many CPAP users encounter, but no one seems to talk about. Not only does she pull the covers back on these lesser-known issues, but she also offers solutions for rookie CPAP users.
Some of the topics and issues Cooksey covers in her workbook include:
- Aerophagia (painful trapped gas)
- Leaking masks
- Rainout (condensation)
- Hair breakage
- Comfort settings (which many people are unaware of)
- Marks/irritation on face from headgear
- Accessories (which can make a big difference for some people)
- Cleaning
- Travel tips
A Long Overdue Users Guide for CPAP
New OSA patient Carolyn Blasdel of Tacoma, Washington, agrees a resource like this is long overdue.
Blasdel told Sleepopolis that when she picked up her CPAP machine in April 2024, a representative from the DME company came out to her car (COVID restrictions were still in place) with the machine and a stack of literature to go with it. When she asked if anyone would show her how to get started with the device, the DME rep directed her to videos on YouTube.
And much like Cooksey, Blasdel’s issues started from day one. First, she was given a nasal mask that left her unable to breathe. Needless to say, that didn’t work for her, and she ended up buying a face mask out of pocket to keep things moving.
But her issues with CPAP didn’t end there. An ill-fitting face mask, painful gas (aerophagia) that left her with nausea and vomiting, hair tangling in the mask, and a sore throat that was so bad she thought she had strep were just some of the other issues Blasdel found herself up against in the first few weeks and months on CPAP.
Blasdel is just one of countless OSA patients who struggled to make heads or tales of a therapy that’s supposed to be life-changing. CPAP may be the gold standard for OSA, but without the proper support, non-compliance will continue to be an issue. Cooksey’s workbook is a giant leap in the right direction.
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Sources
1. Aalaei S, Rezaeitalab F, Tabesh H, et al. Factors Affecting Patients’ Adherence to Continuous Positive Airway Pressure Therapy for Obstructive Sleep Apnea Disorder: A Multi-Method Approach. Iran J Med Sci. 2020;45(3):170-178. doi:10.30476/ijms.2019.45785
2. Rapelli, G., Pietrabissa, G., Manzoni, G. M., Bastoni, I., Scarpina, F., Tovaglieri, I., Perger, E., Garbarino, S., Fanari, P., Lombardi, C., & Castelnuovo, G. (2021, July 9). Improving CPAP adherence in adults with obstructive sleep apnea syndrome: A scoping review of motivational interventions. Frontiers. https://www.frontiersin.org/articles/10.3389/fpsyg.2021.705364/full#B80
3. Blasdel, Carolyn. Author interview. October 6, 2024.
4. Cooksey, Emma. Author interview. September 20, 2024.
