A good day’s work for Amy Sawyer means a good night’s sleep for everyone, or, to be precise, at least 50,000 people by September.
That’s the target set by a national research partnership in which Sawyer, an assistant professor in Penn State’s College of Nursing, plays a vital role.
The Sleep Apnea Patient Centered Outcomes Network, coordinated by the American Sleep Apnea Association and the Division of Sleep and Circadian Disorders at Boston’s Brigham and Women’s Hospital, recently launched MyApnea.org, a tool aimed at helping to identify the issues important to those being treated for sleep apnea and those who may be at risk.
Sawyer, whose research focuses on sleep and sleep disorders across the life span, is particularly interested in the issues and challenges faced by those with obstructive sleep apnea. Along with Orfeu Buxton, associate professor of biobehavioral health at Penn State, she serves as a “sleep champion” for MyApnea.org and encourages sleep apnea patients and those at risk to register at the new website. Those who sign up will become part of a nationwide sharing and learning community composed of doctors, researchers and sleep apnea patients .
“The overall goal is to identify what patients consider to be important outcomes of treatment, and then develop instruments and tools to measure those outcomes,” Sawyer said.
SAPCON and MyApnea.org are part of a historic research endeavor called the National Patient-Centered Clinical Research Network that aims to enlist 100 million Americans to provide personal health data. This data will help to guide the course of research for many serious and chronic diseases. PCORnet it is an initiative of the Patient-Centered Outcomes Research Institute, which was established through the Patient Protection and Affordable Care Act of 2010.
It’s no surprise that President Barack Obama’s signature piece of health care legislation places a high priority on research related to sleep apnea; more than 18 million American adults have the disorder, which can lead to high blood pressure, heart disease and cognitive problems, according to the National Sleep Foundation. Children aren’t immune either, Sawyer said.
“As the rate of obesity (a risk factor for sleep apnea) in school-age children has risen, so has sleep apnea in that age group,” Sawyer said. “Studies have indicated that children with sleep apnea have higher morbidity rates, as well as greater incidence of behavioral and cognitive development issues.”
The National Geographic Channel documentary “Sleepless in America” is helping to draw attention to the serious consequences of sleep disorders — not only for those who suffer from them, but for society as a whole.
“Do most people understand the increased risk of cancer, cardiovascular problems and other health risks associated with chronic sleep deprivation? Probably not,” Sawyer said. “When you cut yourself short on sleep, you’re harming not only your health, but your quality of life as well.”
Sawyer joined the College of Nursing faculty in 2011, after completing two postdoctoral fellowships focused on sleep and sleep disorders research at the University of Pennsylvania. Previously, she worked as a clinical nurse specialist in the pulmonary division of an academic medical center, where she managed patients with sleep disorders and first became interested in the subject as a research area.
“Nurses can make such a profound contribution to the management of sleep disorders,” she said. “Beyond the medical interventions used to treat these disorders, there are behavioral aspects and environmental factors that need to be considered as well. That’s where nursing comes in.”
To date, Sawyer’s research has focused primarily on outcomes related to patients’ use of continuous positive airway pressure therapy, a common treatment for obstructive sleep apnea. Her most recent project, in collaboration with Vittaldas Prabhu and Yuncheol Kang, of Penn State’s department of industrial and manufacturing engineering, is the development of a laboratory prototype for obtaining at-home sleep health information. Part of her project involves the integration of the data into ways patients and health care providers make decisions. The prototype will be tested in a clinical research study with actual sleep apnea patients using CPAP therapy.
Underuse of CPAP is a significant problem, Sawyer said. Studies show that many users either use the treatment for less than the prescribed amount of time or discontinue it altogether. Sometimes, simple minor behavior modifications are all that are needed to help people increase their use and, as a result, improve patient outcomes.
“We need to identify what’s important to both current and prospective patients in order to get a clearer picture of the entire spectrum of the experience of living with this disease,” Sawyer said.
After registering at MyApnea.org and providing some basic personal information, individuals will have the opportunity to complete short online surveys that will provide information crucial to sleep researchers and health care providers. The participants also will have access to educational resources that will help them consider their options and make treatment decisions, Sawyer added.
“This will be the largest database of information on this disease. It will provide a complete picture of living with sleep apnea from diagnosis through treatment,” she said. “We want to know how people are doing. We need to better understand what variables we are responding to, so we can develop better instruments for measuring them, and, ultimately, better treatments that patients will continue to use and benefit from.”
For more information or to participate, visit www.MyApnea.org.