mrueschman

Thanks for your input, @2Sleepy

I agree about the importance of your suggested questions -- trying to get at length of overall CPAP use and the major reason(s) why someone has stopped using CPAP. I will share with the team to discuss the possible incorporation of such questions.

Kicking this back to the top -- we recently released a new Research Highlight about the didgeridoo and its potential use in the treatment of sleep apnea. Thanks to Dr. Dennis Hwang for the great write-up!

Edit: Fixed link.

Here's my perspective as a clinical data manager who has worked on sleep apnea projects. As part of these research projects, our group often receives sleep study data to review, score, and send results back on. It seems that each project has its own "rules" in assessing the sleep study for the marking of different event types, e.g. hypopneas, apneas, arousals, limb movements. These rules serve as the basis for the sleep scorer's marking events while reviewing the sleep study signals.

As for what constitutes an event, I think the documentation for the Sleep Heart Health Study provides an example of what these rules/definitions look like. Keep in mind, the Sleep Heart Health Study is nearly 20 years old and event definitions have shifted over time! Here's the obstructive apnea definition:

Obstructive Apneas are identified when the amplitude (peak to trough) of the airflow signal decreases to a flat or almost flat signal (showing a 75% reduction of the amplitude of “baseline” breathing) if this change lasts for > 10 s. Baseline breathing is defined as a period of regular breathing with stable oxygen levels (ResFigures 2a, 2b, 2c, and 2d).

The site also has screenshots of sleep signals (e.g. "airflow") that indicate and distinguish different event types.

We are excited to launch new surveys that assess pediatric sleep apnea. Please take a moment to review the questions that we have pulled together that have been used extensively in other studies looking at pediatric sleep apnea. Let us know if any important issues are missing from the surveys. During your review, please keep in mind the following:

1. These surveys are intended for parents/caregivers of diagnosed children ages 2-8 years old. After we successfully launch these surveys we intend to offer additional pediatric surveys that older children will be able to complete themselves.
2. For many of the questions we will need to provide answer choices (like multiple choice) rather than have patients write in or explain their answers. This is often called “free text” in survey jargon and it is very difficult and time intensive to interpret these types of answers.
3. The goal is to keep each survey around 10 questions, similar to the current set of surveys available on the site. Some of these surveys are a bit longer since there are group of questions that need to stay together to create a scale.

The surveys are linked below for your review. When referencing a specific question, please also include the name of the survey, e.g. "Your Child's Sleep Behavior":

• About Your Child
• Additional Information About You
• Daytime Sleepiness
• Your Child's Bedtime Habits
• Your Child's Health Conditions
• Your Child's Quality of Life
• Your Child's Sleep Apnea
• Your Child's Sleep Behavior
• Your Child's Treatment
• Your Child's Waking Behavior
• Your Interest in Research

We are excited to develop a new survey assessing what many of you have identified as a key issue for patients - CPAP Adherence. Please take a moment to review the questions that we have pulled together and let us know if any important issues are missing from the survey. During your review, please keep in mind that for many of the questions we will need to provide answer choices for the survey respondent rather than have patients write in or explain their answers. This is often called “free text” in survey jargon and it is very difficult and time intensive to interpret these types of answers.

The goal is to keep the survey under 10 questions, similar to the current set of surveys available on the site.

View the survey draft

Thanks for sharing your thoughts on the matter!

Update: The Airing Indiegogo campaign launched earlier this week. The campaign has already greatly surpassed its original funding goal.

https://www.indiegogo.com/projects/airing-the-first-hoseless-maskless-micro-cpap

ResMed has made a website available that describes SERVE-HF. The site includes FAQs (at the bottom) for patients, healthcare professionals, and commercial partners.

http://www.resmed.com/us/en/serve-hf.html

This research highlight was provided by Judith Owens, MD, MPH, Director of Sleep Medicine at Children’s National Medical Center and MyApnea.Org Steering Committee Member.

Background

Obstructive sleep apnea is now the number one reason for performing adenotonsillectomy (surgical removal of the tonsils and adenoids) in children in the U.S. It is estimated that over 500,000 adenotonsillectomies are performed annually in children. While in general this procedure is considered low risk, there are known potential consequences include bleeding and blockage of the airway due to swelling in the immediate post-operative period. Media attention paid to the unfortunate brain death of a 13-year-old girl in Oakland, California following an adenotonsillectomy last December raised understandable concerns for parents regarding the safety of this procedure.

The Study

A large prospective study by Dr. Anchana Thongyan and colleagues was designed specifically to address the question of what factors might predict medical complications in children in the 2-week period following surgery.¹

Study Results

There were 329 subjects; 27% were less than 3 years old and 24% were obese and thus a substantial percentage was considered “high risk”. Almost 30% had some respiratory complications, and a third had non-respiratory complications such as bleeding, although none of these were serious. Severity of sleep apnea as determined by an overnight sleep study done prior to the surgery was associated with respiratory but not non-respiratory complications. African American children and those less than 3 years old were also at higher risk for respiratory complications.

What does this research mean to you?

While adenotonsillectomy for sleep apnea in children is generally safe, there may be specific groups that have an increased risk of complications related to surgery, including very young and African-American children. In these groups, more intensive monitoring in the post-surgery period may be warranted. The association between severity of sleep apnea and complications points out the importance of obtaining a sleep study before surgery to determine relative risk.

References

1. Thongyam A, Marcus CL, Lockman JL, Cornaglia MA, Caroff A, Gallagher PR, Shults J, Traylor JT, Rizzi MD, Elden L. Predictors of Perioperative Complications in Higher Risk Children after Adenotonsillectomy for Obstructive Sleep Apnea: A Prospective Study. Otolaryngol Head Neck Surg. 2014 Oct 9. pii: 0194599814552059. [Epub ahead of print]

Seth Ginsburg, Principal Investigator for the "ARthritis patient Partnership with comparative Effectiveness Researchers" (AR-PoWER PPRN) project, posted an article entitled: "Everyone Benefits From Research, But What Are Your Responsibilities?"

From the article:

PCORnet is a breakthrough for everyone, because patients are now involved in all phases of research, and that includes being privy to the results. “How we’re doing” as patients is no longer sealed in a vault of other results, and instead will be applied in real-time to the decisions we make with our doctors about how to manage our conditions – today and in the future.

If you or someone you know suffers from a chronic disease – as ubiquitous as high cholesterol, heart disorders, arthritis, sleep apnea, breast cancer, multiple sclerosis, COPD; or as rare as vasculitis, Duchenne muscular dystrophy or any of the other nearly 100 conditions that PCORnet has an interest in learning more about, it’s your duty to participate in this new approach to research. Millions of people have stepped forward to participate in key research that has gotten us this far. What will you do in order to help the next generation burdened by these diseases? Give technology a chance to live up to its promise.

We at MyApnea.Org are trying to live up to that promise and we appreciate everyone's help!