Now that we have completed a look at the six challenges, we move to the second main heading in the SAPCON article in Sleep Review, entitled PATIENT-SUGGESTED SOLUTIONS. This section is remarkable for its brevity and yet includes nearly all essential resources and strategies that must be considered in optimizing the care of OSA/UARS patients. Not only is the information the epitome of “less is more,” but also I would argue most sleep professionals would gain more by reading and attending to this set of prescriptive steps than sifting through lengthy review articles on the topic of PAP adherence.
My comments on each of their bullet points (below) attempts to provide some clarifying approaches to the steps they have outlined, but reading this section for yourself whether a patient or professional will expand your understanding of how to tackle numerous obstacles that interfere with any PAP management model.
In the introduction to this section, the authors point out how solutions derive from “improving basic communication” as well as efforts to “individualize treatment and management.” Sounds simplistic, right? In fact, it is exactly what most patients complain about not receiving while struggling with PAP. That is, most PAP patients want and need more information more readily available and tailored specifically for their circumstances and difficulties. Undoubtedly, all patients want this approach for any medical illness, but PAP management is different for all the reasons discussed in the prior posts on SAPCON and especially because we are dealing with a vexing and unwieldy physical device that is unique in comparison to prescribing a drug. To extend the analogy, PAP requires the engagement in a markedly different type of system compared to how one receives a medication through a pharmacy.
- Determine with each DME you work with the type of information addressed with each patient by sleep staff and DME staff, then fill in the cracks, which should naturally lead to who and when to call.
Comment: Excellent advice on paper, but its application always has the potential to be sabotaged by the turn over at either entity. In our experience turnover is much greater in our local DMEs than in our sleep staff, thus it is common for things to fall through cracks among less experienced employees no matter how dedicated they are to the job. On the other hand, administratively, I have been impressed with how often DME staff will alert us to rules and regulations affecting their patients’ access to resupply or even initiation of PAP treatment. The bottom line is we always err on the side of caution, which means assuming the current reliability of a particular DME may be lower than expected. Although this approach requires more work at our end, unfortunately we have not found consistent utility in providing constructive feedback to local DMEs, in contrast to our excellent working relationship with Classic SleepCare. Instead, we have grown to accept the waxing and waning pattern of diligence, which is most pronounced within the national franchise DMEs, perhaps due to their competitive bidding successes leading to lower reimbursements and plausibly fewer resources.
- Provide useful information in writing at appointments including key terms, website links, and a patient process map.
Comment: In medical school training and residency (1979-1986), we learned the importance of providing patient’s with written instructions at the end of an appointment so they would refer back to the steps needed going forward. Remarkably, to this day, a sizeable but unknown proportion of physicians do not provide written instructions for patients at the close of an encounter. In addition to written instructions, all of our sleep study reports (copies of which all patients receive) include a list of 30 key terms and their abbreviations. Regarding website links we have several on our own site to which we regularly refer our patients:
- Our nasal breathing video series has proven reliable in instructing patients to seriously examine and treat their nasal hygiene problems.
- Our sleep obesity series provides a detailed discussion on how weight loss may be very difficult for individuals chronically fighting off fatigue and sleepiness from untreated sleep disorders.
- Last, our very short video on the problem of nighttime trips to the bathroomexplains the link between OSA/UARS and nocturia.
- Our main site sleeptreatment.com also provides numerous links on sleep disorders, treatment pathways, and assorted other resources to help patients increase their sleep knowledge.
- And, our new patient process link provides a thorough description of what to expect from the ABCs to the ZZZs of a sleep treatment program in the form of an easy to read 16-page pdf that can be viewed online.
Some sleep centers no doubt have more or less of these types of resources, yet nothing replaces the human factor of being able to call the center to discuss a problem and gain a solution from a sleep professional – either at the sleep clinic, the sleep lab, or the DME.
- Follow-up calls early on or in timely periodic fashion should be a regular component of any sleep center or DME operation.
Comment: We concur with this point in spirit, but practically it is often the case more so than anyone might like to hear that lots of patients simple do not want to be bothered, because they view their efforts to treat their sleep problems from a different perspective than the sleep professionals. One typical patient encounter, probably seen at most sleep centers, is an individual who either rapidly gave up on PAP therapy and is in no hurry to start over or is using the device at a level satisfactory to him or her regardless of fair or worse outcomes. In other words, people live busy lives and once they have attempted PAP, they often make quick decisions to reject it if they cannot make the system work for them. Or, if they are using the device a few hours per night on a few nights per week, they presume this progress is an adequate start. While it is true many patients who quit early could be salvaged, it is not always easy to predict who will be receptive to coaching and new efforts. Will early follow-up help pinpoint who to maintain contact with? Certainly, but early contact is only as useful as the degree of motivation within the individual. We use early contact follow-up routinely and are routinely disappointed by those individuals who simply ignore any and all contact efforts. However, if we look at the people who remain motivated, there is no question that regular follow-up means a great deal to these individuals and serves to increase their motivation as well as enhance their skill set to be able to use PAP therapy.
- Discussing range of treatment options and their risk/benefits.
Comment: We discussed this concept in Part 3 of the series The only reminder I would add is that in nearly all cases, a patient is going to achieve the best response when using a PAP device, and most likely an advanced PAP device such as ABPAP or ASV, albeit some patients do so with CPAP, APAP, and BPAP, often with the addition of EPR systems. But, it cannot go without saying that OAT or a surgical intervention plays an important role in OSA/UARS treatment because of so many patients unable to tolerate PAP or unwilling to persevere due to the numerous hassle factors. A 50% improvement with OAT or a surgical intervention is most decidedly better than zero treatment, i.e. PAP rejection or intolerance.
- Be on the lookout for patients with greater complexity, including those with complex sleep apnea as well as co-occurring mental health processes such as PTSD and insomnia.
Comment: To their list we would add leg jerks, nightmares, hypnotic dependency, anxiety and depression as well as a host of co-morbid medical conditions, which in their own right also cause many extenuating circumstances in managing the patient, not the least of which is to worsen anxiety and depression symptoms. Heart failure or pulmonary patients dealing with life-threatening illnesses do not enthusiastically embrace something like PAP, because it is initially perceived as adding another barrier to catching one’s breath. Overall, as we have described in numerous related posts, it is imperative to make the PAP therapy experience as comfortable as is humanly possible. And, as we have described, the ABPAP and ASV devices provide added comfort by eliminating or drastically decreasing the problem of expiratory pressure intolerance. To underscore the point made by the SAPCON authors, I would vigorously argue that the complex patients are the norm at most sleep centers, because it is rare to find so-called straightforward cases of OSA. Thus, I always encourage other sleep doctors to use the “guilty until proven otherwise” approach, that is, by maintaining the attitude of “a more than meets the eye” perspective, fewer patients will reject PAP or be lost to follow-up.
- Patients who use PAP regularly yet remain symptomatic or who complain about the “awfulness” of having to use PAP are clearly headed down paths of noncompliance; therefore, it is essential to tease apart the issues that continue to prevent them from receiving benefits or from tolerating the device with a better mindset.
Comment: The key point the authors are exclaiming is the necessity to be very specific in querying the patient on what might have been missed previously or what simply is now coming to the forefront and creating the lack of benefit or interfering with efforts to use PAP.
While a list of factors needing to be addressed is not lengthy, it is noteworthy how often we hear about simple things being overlooked, according to second opinion patients we have treated. We have discussed many of these issues in numerous prior posts; here, I want to focus on out of the ordinary tips that address these italicized issues (below) that may fall through the cracks:
Leg jerks: Many sleep docs still do not appreciate leg jerks are not categorically linked to EEG arousal activity that disrupts sleep. In other words, leg jerks without EEG arousal may still be disrupting sleep in what are known as “autonomic arousals”—changes occurring in the brain yet invisible on the sleep study. Thus, patients who continue to demonstrate leg jerks without EEG arousal will often discover that treatment with medication markedly improves their response to PAP.
Aerophagia: While many sleep professionals may jump to the conclusion air swallowing must be related to mouth breathing or mask leaks, two frequently overlooked causes include leg jerks and chronic rhinitis. It appears leg jerks trigger the patient to swallow for unknown reasons. Rhinitis, especially of the nonallergic type frequently associated with post-nasal drip, causes swallowing all night long. One or both conditions must be treated in such patients to eliminate aerophagia.
Device Maintenance: Many patients imagine their equipment can be used night after night without cleaning the tube, headgear, and mask. Even a chinstrap can be washed. For the psychological benefits alone, it is a very refreshing feeling to climb into bed and wear a clean mask with clean headgear, breathing air through a cleaned tube and humidifier system. And, this cleanliness may yield other benefits by decreasing bacteria counts on the equipment and potentially reducing risk for infections.
Self-Reported Poor Responses: Do not trust the outcome surveys patients complete at follow-up appointments unless these measurements are consistent with the subjective complaints or improvements described by the PAP users. Many patients show values in the normal range for sleepiness, fatigue, and insomnia, and yet they know something is not quite right. Here, it is essential to probe the patient, because something is missing in the treatment package or something is incomplete in the diagnostic assessment. Clinical depression is one of the more common co-occurring conditions that confuse the patient and the doctor when trying to assess PAP outcomes.
Psychotropic Medications: In our society, far too many patients are hurriedly placed on medications for mental health symptoms. Although a sizeable proportion of these patients can and do benefit from improvements in mood and decreases in anxiety, nearly all these drugs cause side-effects, many of which directly or indirectly act on sleep architecture (stages of sleep) or to aggravate leg jerks. Because most sleep doctors are more likely to see patients downstream from when the patient was placed on these drugs years earlier, it is a delicate and lengthy process just to broach the topic of whether or not these drugs are interfering with the patient’s specific response to PAP or the general efforts to improve sleep quality, continuity, and duration.
Headgear and mask discomfort: We are now fortunate to live through the midst of a technological revolution on mask design, which has led to large improvements in comfort and usability. Dedicated sleep technologists at sleep centers or respiratory therapists at DMEs must diligent leave no stone unturned in helping patients to solve these problems. With the new array of mask equipment, the choices are so much broader and so much more precise; virtually all mask issues are now solvable. Plus, mask liners reflect another layer of mask technology development to improve fit and comfort.
Nightmares: Many patients using PAP therapy report a subsequent decrease in disturbing dreams. Therefore, in the early going, a patient with co-occurring OSA/UARS should be reassured that chances favor a reduction in bad dreams with effective use of PAP. For those patients whose nightmares do not recede or in rare cases worsen, there are numerous nightmare treatment strategies available, chief of which are Imagery Rehearsal Therapy and the drug Prazosin. In these less common cases, patients may stop using PAP until the nightmares are treated.
Insomnia: There are many strategies for treating insomnia among patients with OSA/UARS. Many sleep doctors will initiate medication trials, but we do not favor this approach. Cognitive-behavioral therapy for insomnia is a gold standard treatment; and, though many patients see a lessening of insomnia with PAP therapy, among individuals with persisting insomnia complaints discretion is often needed to determine whether PAP should be deferred temporarily until the patient completes a CBT-I course, after which PAP can be more easily re-initiated.
No doubt, you can think of other snafus as well, but as the SAPCON authors declared we must be vigilant and precise in our discussions with our patients to drill down to the level where the problem is occurring, so we accurately identify the issue, and then formulate a more complete plan for resolution.