Preventable misunderstandings and information gaps abound among sleep apnea patients, finds the Sleep Apnea Patient-Centered Outcomes Network. Sleep professionals can make adjustments, such as providing care instructions in writing, to make big differences.
The Sleep Apnea Patient-Centered Outcomes Network (SAPCON) is a virtual patient-powered research network initiated in 2013. Available online at MyApnea.org, the network was stimulated by the Patient-Centered Outcomes Research Institute (PCORI) vision of creating a “network of networks” of diverse stakeholders collaborating to accelerate patient-centered comparative effectiveness research.
To enhance research aimed at improving the care of and outcomes for patients with sleep apnea, MyApnea.org provides a forum for patients’ voices and mutual support. There are currently more than 8,000 registered users.
On MyApnea.org’s forums, we saw patients noting significant gaps in the care and information they receive from sleep medicine professionals. Patients also offered solutions to these gaps. When reporting this article, we also solicited additional feedback from registered users about where they see information gaps, what they are missing from their clinicians, and suggesting best practices. We have compiled the following challenges and solutions for a professional audience. To maximize effective treatment, sleep medicine clinicians must recognize these gaps and consider how they may best partner with patients to address them.
Challenges Commonly Faced by Patients
They said I need a machine, that’s it? Many patients feel inadequately informed or guided about their sleep apnea. While many clinicians explain terms such as “hypopnea,” “AHI,” or “centrals” to their patients, patients are frequently unable to assimilate them. This is especially true at the time of testing and diagnosis when patients are confronted with many new concepts and have not yet experienced or benefited from treatment. Patients note this disconnect:
“I just learned yet another thing is ‘wrong.’ I need time to wrap my head around this!”
“He kept talking despite my telling him I was getting confused, and couldn’t write and listen at the same time.”
“My doctor has sleep apnea but the only guidance I got when he handed me my machine was ‘I wash my mask and hose in lavender-scented dish-soap.’”
From a sleep professional who is also a patient:
“Patients are often overwhelmed and do not remember details of office conversations.”
People have different learning abilities and preferences. Some need personal guidance to resolve issues, while others say:
“Patients want a document outlining the process of diagnosis through treatment so they have some sense of the steps to be taken, their role in the process, the various professionals who will take part, and the possible outcomes.”
So I have apnea. So what? Patients are rarely informed that their sleep apnea is, or may be, linked to comorbidities they may have or are at risk for, despite research illuminating those linkages. Neither are they educated on how treatment may decrease risk for chronic diseases and fits into their overall healthcare.
“I was simply told I have sleep apnea, causing loud snoring and sleepiness. I was not given other information on how [it] could contribute to other health conditions if untreated.”
“I don’t think sleep practitioners emphasize the dangers of non-adherence enough.”
Adherence skyrocketed when some patients understood connections:
“My clinician published a paper on links between sleep apnea and heart disease. It changed my perception of the importance of using my CPAP whenever and wherever I sleep: It can help to save my life.”
“I was never told why sleep apnea needed treating….Once I discovered for myself that it was responsible for my early-dementia-like condition, I did everything I could to deal with treatment issues, and use it every night.”
Are there options besides CPAP? Patients report that CPAP is often prescribed without them being told of the range of treatment options such as oral or neurostimulation devices.
“When my sleep doctor told me I had sleep apnea, he prescribed CPAP. A friend had told me they were CPAP intolerant and got an oral appliance from their dentist. I asked him if this was a good option for me.”
“Nine years of treatment and I’m just now hearing about other options from a friend?”
Frustration rapidly leads to non-adherence. Once treatment is prescribed, it must be initiated. Once initiated, it must be maintained to be effective. Regardless of treatment modality, patients report a need to know where to obtain support and solutions to problems like facial sores, mandibular advancement device (MAD)-related drooling, or CPAP “rainout.” Treatments can also cause social stress, rarely addressed in clinical settings.
Nancy Rothstein, MBA
“The embarrassment of wearing the mask in front of your bed partner even though you KNOW you need to wear it for your health! Mask leaks make embarrassing noises, too.”
“To sleep disorder specialists, please know that adjusting to CPAP and getting it to work properly is not easy. I think that is a major factor in non-adherence. People need guidelines and assistance especially in the first 30 days.”
“He couldn’t tolerate the CPAP so he got an MAD. He stopped using that, too, because every night he drooled all over. Now he doesn’t use anything.”
Delays in diagnosis or outright misdiagnosis. Many have struggled for years with unrecognized sleep disorders. Data from the MyApnea.org portal indicates the interval between symptoms and diagnosis often exceeds 10 years. There are gender differences that may contribute to lower diagnostic rates in women.1 Ethnic and racial minorities have a high prevalence of unrecognized sleep apnea,2 and thus may suffer disproportionate comorbidities. And long-term undiagnosed apnea can present with neurocognitive impairment3:
“It took over 13 years for this woman to get diagnosed. We may already be impaired, have little ability to concentrate, retain information, or follow through; we may have substantial executive function deficits not apparent in a short meeting.”
Sleep apnea’s variable phenotypes also can change over time. Assuming a “one size fits all” approach can lead to poor response.
“I can’t keep the mask on all night, it feels like it’s breathing against me, so off it goes. If I didn’t have to do it for work, I wouldn’t use it at all.”
“One sleep doc told me I wasn’t giving it enough time. I’d struggled on PAP for years. Finally, a second opinion showed I had complex sleep apnea. My new EERS [enhanced expiratory rebreathing space] treatment is making a massive difference.”
So who do I call? While clinicians often assume lines of communication are clear, one of the most common gaps patients note is they do not know who to call when they have questions or problems:
Si Baker-Goodwin, EdD
“I often get the sense that equipment providers expect physicians to educate patients, and physicians expect home care providers to educate patients. This expectation on each side often leads to little or no education of the patient.”
“When new to a treatment, you don’t know what you don’t know—so you don’t always know when something isn’t working correctly, what to ask, or when another visit to the physician is a must. It’s too easy to give up.”
Patient-Suggested Solutions
Most suggestions derive from improving basic communications, but include calls to individualize treatment and management. Good patient-clinician partnerships can resolve many obstacles and be key to maximizing outcomes.
- Determine, with durable medical equipment (DME) providers you refer to, what information and guidance you each will provide to patients. Then fill in the cracks. Make this clear to patients so they know who to call for help, and when.
- Give information in writing at appointments and post it on your practice’s web portal, including:
- basic definitions of key terms
- links to resources such as MyApnea.org
- an expectable sequence of events from diagnosis through treatment, including when to expect or ask for a review of treatment or modality
- reminders of the linkages to other likely or existing comorbidities and of the possible consequences of non-adherence.
- Follow-up calls with patients are essential, especially early on, as well as periodically thereafter. Ensure frequency of follow-up is sufficient to meet individual needs.
- Discuss the range of treatments available, including the risks/benefits and likely outcomes associated with each modality to help joint decision-making.
- Be aware of patients with complex sleep apnea who may not respond well to routine PAP. Consider other conditions requiring tailored treatments, such as post-traumatic stress disorder and insomnia.
- Patients who report that they “can’t stand” treatment, or remain symptomatic despite regular use, should be carefully queried about what is intolerable. This could reveal simple remedies, suggest other treatments, or even refine diagnoses.
To benefit from treatment, patients must have the support of committed clinicians to overcome the problems described in this article. Help meet their challenges and improve outcomes for patients and practices alike!
Susan Redline, MD, MPH
Nancy Rothstein, MBA, The Sleep Ambassador, is director of CIRCADIAN Corporate Sleep Programs, a member of the Steering Committee of MyApnea.org, and a member of the NIH Sleep Disorders Research Advisory Board. Si Baker-Goodwin, EdD, is a writer and former licensed psychologist who specialized in differential diagnosis and practiced clinically before being derailed by decades-long undiagnosed, untreated sleep disorders. She is co-chair of the Patient Engagement Panel at SAPCON. Susan Redline, MD, MPH, is the Farrell Professor of Sleep Medicine at Harvard Medical School and Brigham and Women’s Hospital. She co-leads SAPCON. The authors wrote this article for SAPCON and gratefully acknowledge contributions of SAPCON leaders, especially Sherry Hanes, Mark Hanson, Zinta Harrington, MD, James C. Johnston II, PhD, Dan Mobley, Kathy Page, and the individuals who participate in the MyApnea.org portal.
References
1. Shah N, Hanna DB, Teng Y, et al. Sex-specific prediction models for sleep apnea from the Hispanic Community Health Study/Study of Latinos. Chest. 2016;149(6):1409-18.
2. Chen X, Wang R, Zee P, et al. Racial/ethnic differences in sleep disturbances: The Multi-Ethnic Study of Atherosclerosis (MESA). Sleep. 2015;38(6):877-88.
3. Macey PM, Kumar R, Yan-Go FL, Woo MA, Harper RM. Sex differences in white matter alterations accompanying obstructive sleep apnea. Sleep. 2012;35:1603-13.
I have a question regarding my 14 yr old granddaughter. Since she was a pre-schooler she sometimes goes into a “coma Like sleep” is what I call it and when trying to wake her I often have to use some sort of water to wake her up like cold water rags on her face of dripping water on her. She has been doing this like of sleep her whole life, when in elementary school the school would allow her to be late coming to school. She is a good student but in high school now her tardys are not allowed. Could this be a form of sleep apnea of ADHA related problem. Is this a possible explanation for this sleep problem. I certainly would appreciate your thinking on this question. Thank you in advance for your response.
Carol Kramer
Carol, kids can have apnea and it can cause them to be sleepy or even hyperactive during the day. But the symptoms you describe can also be narcolepsy. I would definitely have her evaluated by a Board Certified Sleep Doctor. There is a test called a Multiple Sleep Latency Test for narcolepsy which is usually done after apnea is ruled out.
Do check out MyApnea.Org as there are some Pediatric Surveys that could also give you some insights! That is how I realized that my 19 year old had sleep apnea probably since he was a young boy. And of course, a Board Certified Sleep Doctor is hopefully something already in progress!