CPAP Support Networks: The First Three Days Can Make All the Difference
The Importance of First Impressions
Let’s face it. The transition to regular nightly CPAP use can be jarring even to the most willing participants. After a life of sleeping without masks or air hoses, it can be difficult get used to. But recent efforts by sleep researchers and clinicians have observed some key early identifiers in the establishment of long-term compliance patterns. Most importantly it is timing, access to support, and the personal context of CPAP adherence that are the highest determinants of success. As far back as the early 2000s researchers have known how important the initial early experiences can be for CPAP patients, but only recently have we discovered just why that is. As it turns out, the CPAP adoption process is often affected by lack of proper support, especially in regard to the “personal context” of how the therapy is integrated into their lives. Researchers hadn’t before realized was just how significantly these early experiences can be modified, improved, and encouraged by problem solving strategies. Whether performed by the patients themselves, or achieved through the guidance of professionals or support communities, every successful adaptation by a new CPAP patient is a step in the direction of a healthier life.
Home is Where The Compliance Is
A new study, published last month in the journal Cureus, offers new insights into what makes the magic difference between compliance and noncompliance for PAP therapy recommendations. According to the study, titled “Adapting Continuous Positive Airway Pressure Therapy to Where Patients Live: A Comparative Case Study,” every patient has specific lifestyle needs that should be addressed if CPAP therapy is going to work for them.
“Where patients live” in this context means a lot more than the physical features of a patient’s bedroom. The “personal context” here is anything and everything that can get in the way of CPAP adoption. And this usually means that both the worklife and the homelife are heavy influences. People don’t usually come home from work with their day behind them. They tend to take themselves to bed with little tolerance for anything but silence and relaxation, and that’s understandable. But the case study, conducted by the Regenstrief Institute and IUPUI (Indiana University – Purdue University Indianapolis), stresses the importance of “new, personalized patterns of behavior” incorporated into everyday activities. These adaptations can be physical, psychological, or procedural, but the bottom line is adherence, however it can be achieved.
“Telling patients they should exercise more or go on a diet is not a prescription for success, and neither is just handing them a CPAP machine,” said Edward Miech, who led the new case study. In an interview conducted by the website Biospace, Dr. Miech describes “critical junctures” when a patient may be indecisive about adopting the therapy as a long-term solution.
Making a Real Difference: One on One CPAP Coaching
A home-based intervention trial titled “Sleep Apnea in Transient Ischemic Attack and Stroke: Reducing Cardiovascular Risk with Positive Airway Pressure,” or the “SLEEP TIGHT” study for short, used both “standard” and “enhanced” intervention techniques to measure the effectiveness of one-on-one support. Again, the comparisons highlighted the adaptive processes of CPAP therapy adherence, particularly in areas of personal context. In some cases, patients overcame challenges with minimal support, while others required help from study staff or referrals to sleep specialists. The interventions included everything from in-person contacts to telephone consultations to standardized educational sessions emphasizing the positive effects of continued CPAP use. As expected, both the quantity and quality of the support interventions affected adherence outcomes, with the most intense encouragement of CPAP adherence correlating with the highest rate of compliance. The takeaway, of course, is that CPAP compliance depends heavily on the development of personal strategies of use, and that quality support is often bridge that patients need to reach those strategies.
Another challenge exists in the number of sleep specialists available for regular and ongoing visitations. According to a white paper published recently by the physician search and consulting firm Merritt Hawkins, there is a general shortage of physicians in the current healthcare market, but especially for those with specialties that are in growing demand. The paper, titled “Physician Supply Considerations: The Emerging Shortage of Medical Specialists,” lists four main specialty areas in short supply: psychiatry, otolaryngology (ear, nose, and throat medicine), pulmonology (respiration medicine), and neurology; all of which are related to sleep and sleep apnea. In fact, sleep specialists often emerge from these four main branches of research.
These shortages are in part due to the rapidly aging baby boomer population. According to Merritt Hawkins, 75 million baby boomers started turning 65 in 2011. These aging populations account for a majority of patients in clinics and hospitals, visiting physicians three times more frequently than people 30-years-old or younger. And because sleep apnea is associated with the same aging populations, the specialists needed for regular and quality support can be difficult to access. This, on top of the difficulties of CPAP adoption on its own, accounts for many of the failed compliance records cited by researchers and concerned professionals throughout the world.
How to Get the Support you Need
With all this in mind, what can the average patient do to improve their chances of long-term adherence and better health? Well it begins with a little DIY. Whether or not you are able to access quality support, it always best to do whatever you can on your own. If something is bothering you, find out if there is a solution. A little research can go a long way in the medical field, but make sure you are using reputable websites and resources. Below is a brief list of online and local options that can help you between visits to a physician. Don't underestimate online resources, as they can be extremely valuable for those early days when your CPAP device is new to you.
It is also important to demand the help you need. Don’t get discouraged by scheduling difficulties. If not a sleep specialist, there is always a primary physician who can answer your questions or refer you to a clinic. In order to save your life and feel better than you have in years, you will need to seek out the help you need. In some cases, you may not even know what you need to make CPAP therapy work for you. But someone else may have suggestions that can change your experience for the better.
Not everyone has access to quality ongoing support from a specialist, but there are always people willing to help. Here is a list of resources to get you started. If you are having problems, or simply have questions, reach out to someone knowledgeable about the therapy and devices available. The more you know, the better your chances will be.
Apneaboard.com - https://www.apneaboard.com/
This is one of the most popular sleep apnea resources online; a hub of activity where you can find out nearly anything related to sleep apnea, CPAP, and related health concerns.
A.W.A.K.E. - https://www.sleepapnea.org/community/all-about-awake/
AWAKE support groups are local in many areas, so check their listings for your city. While the AWAKE domain is primarily a directory of other resources and user groups, it also includes educational content about sleep apnea, diagnosis and treatment, as well as links to other American Sleep Apnea Association resources, such as their CPAP assistance program.
FreeCPAPadvice.com - www.freecpapadvice.com
This domain, hosted by The Lanky Lefty, a registered polysomnographic technician in Elk Grove, California, provides a CPAP user forum, device reviews, and a YouTube Channel video series featuring both educational and entertaining content.
MyApnea.org - https://myapnea.org/
MyApnea is a community of patients, doctors, and researchers seeking to improve the experience of sleep apnea and its treatments. Resources include a forum, research news, and a collection of personal stories about sleep apnea and CPAP experiences.
ASAA CPAP Assistance Program - https://www.sleepapnea.org/community/cpap-assistance-program
The ASAA is a patient-led nonprofit that advocates for people with sleep apnea, and its CPAP Assistance Program (CAP) can help raise the funds to purchase your CPAP equipment if you are a patient in need.
CPAPtalk.com Wiki - http://www.cpaptalk.com/wiki/index.php/CpapWiki:About
The CPAPtalk.com Wiki is a resource list and knowledge-base for sleep apnea and CPAP information. Its primary focus is on CPAP therapy and CPAP device subjects.
Your Device Retailer/Distributor -
It should also be noted that your device retailer and/or distributor can help a great deal when it comes to questions about your device. SistemmaCPAP.com has telephone, email, and chat access for any questions or concerns about your product or its use, but we are also here to answer general questions about sleep apnea and CPAP subjects you may be interested in. Don’t hesitate to give us a call. We’re always here to help.
American Sleep Apnea Association - https://www.sleepapnea.org/community/
Biospace - https://www.biospace.com/article/-home-is-where-success-or-failure-rests-personal-context-directly-affects-cpap-use/
Cureus Medical Publishing - https://www.cureus.com/articles/17479-adapting-continuous-positive-airway-pressure-therapy-to-where-patients-live-a-comparative-case-study
NCBI - https://www.ncbi.nlm.nih.gov/pubmed/26811929
Sleep - https://academic.oup.com/sleep/article/30/3/320/2708172
Sleepreviewmag - http://www.sleepreviewmag.com/2018/01/medical-specialist-shortage-impact-access-sleep-medicine-services/