SusanR

A big thank you to Dr. Bertisch and her team of patients and others who developed such a wonderful set of resources for patients with sleep apnea. The MyApnea team would love your feedback on these and any suggestions for improvement. Note that it is easiest to open the pdf version but if you click the window you can also provide feedback there.

No problem! We need to figure out how to best communicate our research to the patient community

I appreciate your skepticism!

I dont think input to the AHRQ report is limited to any geographically area- good, constructive input from anyone affected by sleep apnea should be encouraged.

The recommendations made were based on the totality of data available in the literature-the largest studies are international trials.

the specific mortality study I referenced in from two community-based cohorts from multiple cites across the US. The important point is that these were not "patients" but people who are part of ongoing observational studies. In that community context even those with OSA often dont get treated even when given "feedback".

There have been some more recent studies on mortality (particularly due to heart disease) and Sleep Apnea.

Our research time found that the severity of drops in oxygen after each apnea or hypopneas was predictive to increased mortality:https://pubmed.ncbi.nlm.nih.gov/30376054/.

Other "observational" studies have shown that those using CPAP regularly may be "protected" from an increased mortality risk; but randomized controlled studies have not yet provided the convincing data that CPAP does improve outcomes in patients with cardiovascular risk factors without high levels of sleepiness (the types of patients studies in trials). Please look at the AHRQ recommendation I posted and provide input to their recommendations and needs for the sleep apnea community. thanks

The Task Force posted a draft recommendation statement and draft evidence review on screening for obstructive sleep apnea (OSA) in asymptomatic adults. The draft statement concludes that the current evidence is insufficient to assess the balance of benefits and harms of screening for OSA.

What are your thoughts and lived experiences? Would early screening for sleep apnea have changed the health and well-being for you or someone you know?

Comments are submitted online using the USPTF website, https://www.uspreventiveservicestaskforce.org/uspstf/obstructive-sleep-apnea-screening-draft-recommendation-statement

thanks for all of the good feedback. Our programmer had de-commissioned the email notices a while back as there was concern about spam which resulted in black listing the site. He has re-engineered this. Please see directions:

To receive emails from the forum the user should: Under Settings -> Email, https://myapnea.org/settings/email, a user needs to have emails enabled.

Under Settings -> Notifications, https://myapnea.org/settings/notifications, a user has two options to auto-subscribe to forum topics

• Auto-subscribe when replying to a forum topic
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Users can also manually subscribe and unsubscribe from forum topics.

Please let us know how this works!

Sincerest apologies-- we are carefully considering your excellent suggestions and have requested help from our programmer to implement some of the changes you suggested. Your input really is valued and we are working at ways to become more responsive--we all have alot on our plates--exacerbated by the pandemic. Many thanks for your patience as we try to focus more on ways to make the forum more useful for the community.

Additional Advice from the American Thoracic Society: "For patients on Bi-level PAP and CPAP devices who have severe breathing difficulties, or were very sleepy during the daytime before treatment, have significant pulmonary, cardiovascular or neurologic comorbidity, or who work in safety-critical positions (e.g. professional drivers, pilots, heavy equipment operators), we would recommend that they not stop their prescribed therapy until first discussing with their physician. For other patients, Philips recommends the device should be discontinued and the physician/DME provider be contacted to determine the most appropriate option for continued treatment. If your physician determines that you should continue using this device, consider use of in-line bacterial filter. Consult your Instructions for Use for guidance on installation."

Press release: https://www.philips.com/a-w/about/news/archive/standard/news/press/2021/20210614-philips-issues-recall-notification-to-mitigate-potential-health-risks-related-to-the-sound-abatement-foam-component-in-certain-sleep-and-respiratory-care-devices.html

Recall FAQ: https://www.philips.com/c-dam/b2bhc/master/landing-pages/src/update/documents/philips-recall-faqs-for-dme-hcp.pdf.pdf

PHILIPS PAP USERS: Please review the following information regarding a voluntary recall for certain PAP machines due to safety concerns regarding the sound reducing foam used on a number of devices.

The following message was distributed by Philips today:

"Philips Respironics announced a voluntary recall for Continuous and Non-Continuous Ventilators (certain CPAP, Bi-Level PAP and Ventilator Devices) due to two issues related to the polyester-based polyurethane (PE-PUR) sound abatement foam used in these devices: 1) PE-PUR foam may degrade into particles which may enter the device’s air pathway and be ingested or inhaled by the user, and 2) the PE-PUR foam may off-gas certain chemicals. The foam degradation may be exacerbated by use of unapproved cleaning methods, such as ozone (see FDA safety communication on use of ozone cleaners), and off-gassing may occur during initial operation and may possibly continue throughout the device’s useful life. For information on the Recall Notice, a complete list of impacted products, and potential health risks, visit philips.com/src-update."

Philips advises for patients using BiLevel PAP and CPAP devices:

"Discontinue use of your device and work with your physician or Durable Medical Equipment (DME) provider to determine the most appropriate options for continued treatment."

Sleep clinics are now putting in place procedures for replacing equipment-- many patients using the equipment so affected will want to contact their physician or DME to discuss this. The PAP devices so affected are listed on the Philips web site and include (check with your DME with any questions):

CPAP and BiLevel PAP Devices All Affected Devices Manufactured Before 26 April 2021, All Device Serial Numbers

Continuous Ventilator, Non-life Supporting DreamStation ASV

DreamStation
ASV DreamStation AVAPS

DreamStation ST, AVAPS 60 Series CPAP, ASV

SystemOne ASV4 C Series AVAPS/ST

C Series ASV, S/T, AVAPS OmniLab Advanced Plus(sleep lab) CPAP

OmniLab Advanced Plus In-Lab Titration Device

Non-continuous Ventilator 60 Series CPAP, ASV

SystemOne (Q series) DreamStation CPAP

DreamStation CPAP, Auto CPAP, BiPAP DreamStation Go

DreamStation GO CPAP, APAP Dorma 400, 500

Dorma 400, 500 CPAP REMStar SE Auto CPAP

REMStar SE Auto CPAP

Garbin Plus, Aeris, LifeVent Ventilator

Continuous Ventilator, Minimum Ventilatory Support, Facility Use A 40/30

A-Series BiPAP Hybrid A30 (not marketed in US) V30

A-Series BiPAP V30 Auto Ventilator

Continuous Ventilator, Non-life Supporting A 40/30

A-Series BiPAP A40 (not marketed in US) A 40/30

A-Series BiPAP A30 (not marketed in US)

thanks so much for these insightful comments. It is challenging to design a set of surveys to capture the full spectrum of experiences of people in the MyApnea community. We will try to reorganize the questions so they are presented more clearly for each specific stage of treatment. Many thanks-- these are very good points and we hear you!