Sleep Studies No More? A New Path for Children with Down Syndrome

Sleep Studies No More? A New Path for Children with Down Syndrome

Have you ever had a sleep study? All kinds of people take these studies to discover if they have sleep disorders such as sleep apnea and insomnia, but these studies can often be uncomfortable and disruptive.

For children with Down syndrome and their caregivers, as Sydney van Engelen notes in her recent research, typical sleep studies are often uninviting, costly, and inaccessible. However, these studies are very important. Over half of children with Down syndrome have sleep apnea, which interrupts breathing during sleep and results in behavior problems, cardiovascular complications, and limited functioning during the day due to the poor sleep quality. Because of the importance of diagnosis, these studies have been an unavoidable hardship in the Down syndrome community.

Van Engelen hopes to change this process. She set out to design a more accessible and less intimidating device that can be used at home. It will monitor the signs of sleep apnea for youth with Down syndrome before they endure a full-fledged sleep study.

How does she do this? Let’s talk about it!

Child with Down syndrome involved in an activity
Photo by Nicola Barts (Pexels)

An Iterative, Co-Design Process for Better Sleep Monitoring

Van Engelen conducted her dissertation with the Building and Designing Assistive Technology Lab at Queen’s University. The lab’s philosophy is to “design for one, extend to many” which she took to heart as she began this process.

First, she met with a group of children with Down syndrome and their caregivers. They ranked their needs for such a device. It became incredibly clear that many requirements must be satisfied:

  1. Small and lightweight
  2. Wireless
  3. Material that’s appealing and comfortable
  4. Easy to use and safe
  5. Low cost

Caretakers also expressed the desire to have access to the data, data privacy, and real-time phone notification alerts of any breathing problems. 

This project calls for a flexible, wireless monitoring device and a host of DIY-initiative to take on the challenge.

EmotiBit All-in-One Bundle for open source biometric sensing

Enter EmotiBit

Unlike many commercial wearables, the EmotiBit device met the needed requirements at a reasonable cost: scientifically validated access to raw physiological data and the ability to experiment with real-time signal processing. 

Other devices, like popular smartwatches, tend to provide averages or summaries without making the true, raw data available to users. With EmotiBit’s open-source capabilities, van Engelen could go further and map individual breathing patterns, identify pauses in breathing, and test different processing techniques.

Van Engelen and fellow Queen’s University scholars initially prepared a chest strap prototype before switching to EmotiBit. Van Engelen’s paper says the following about this change:

“While the first prototype would benefit from further iteration and analysis, the iterative design process was terminated due to the release of the EmotiBit…. With the simplicity and compactness of this device, further development of the chest strap was stopped in favour of this device.”

EmotiBit was quickly integrated into the preexisting work and stayed malleable as the project evolved:

  1. Wavelet decomposition algorithms utilized the EmotiBit’s PPG signal for the purpose of detecting breathing issues.
  2. Comfortable mittens with unique child-friendly designs were added over the EmotiBit’s compact size. 
  3. A monitoring app for caregivers was envisioned from EmotiBit’s open-source nature.
Graph of responses to the fit of the device for sleep. "Very comfortable" is over 20% of respondents, "Comfortable" is 70%, "neither comfortable or uncomfortable" is about 5%, and "uncomfortable" and "very uncomfortable" are both 0%.
This table, as reported in van Engelen's (2023) thesis, shows how the 17 participants described the fit of the device from very comfortable to very uncomfortable.

Work Well-Done

While testing the final wearable, van Engelen found that EmotiBit delivered reliable data for this type of study. The child-friendly outer covering options she developed were also generally well-received by participants. After putting on an EmotiBit with a 3D printed cover, covering it with a mitten added extra comfort that made the wearable adaptable for overnight wear: both children and caregivers found the EmotiBit and covering options intuitive to use and put on as a whole. Overall, usability and comfort aligned with robust data capture to create a comprehensive device for sleep monitoring. 

7 graphs showing the process of transforming raw data to respiration signals for sleep studies
The 6 level process used to transform the raw PPG signal of a participant to come to a respiration signal. It shows that this participant's breathing paused twice.
EmotiBit in an ABS 3D case on a finger
EmotiBit in an ABS 3D printed case used in this study
5 variations of mitten covers to protect the device and provide comfort during sleep
Soft and colorful outer-covering options

Van Engelen’s empathy, attention to detail, and research smarts allowed her to take the foundation EmotiBit provided and elevate the tool to a truly innovative sleep monitoring device. At EmotiBit, we’re proud to be part of the toolkit that enables this kind of user-driven innovation. With this work, children can feel protected by their comforting glove–rather than having to head straight for the intimidating and clinical environment of sleep study facilities. Watch out for how these groundbreaking waves continue to progress in how we screen for sleep apnea–for youth with Down syndrome, and others. 

We are proud to be a part of the “Design for one, extend to many” mentality.

Feature Image Credit: Staff Sgt. Christopher Klutts, Public domain, via Wikimedia Commons.

This piece was developed from an informal conversation with Sydney van Engelen and the information in the following thesis: 

Engelen, S. N. v. (2023). Evaluation of Physiological Signals in Wearable Assistive Technology to Detect Obstructive Sleep Apnea in Youth with Down Syndrome. ProQuest Dissertations and Theses. https://unr.idm.oclc.org/login?url=https://www.proquest.com/dissertations-theses/evaluation-physiological-signals-wearable/docview/2866082506/se-2