Patients are always at the center of PCORI-funded projects. But their perspective was fundamental to a University of Arizona sleep apnea study now under way. “The idea itself came from a patient,” says the study’s principal investigator Sairam Parthasarathy, MD.
During a clinic session, the patient said that his life had been turned around since he started using the continuous positive airway pressure (CPAP) machine at night. He added, Parthasarathy recalls, “If there’s any patient of yours who’s not using this machine, let me have a go at him. I’ll convince him that he needs to use it.”
The Problem, and the Problems with the Solution
Obstructive sleep apnea interrupts breathing during sleep, sometime hundreds of times a night.
It doubles a person’s risk of heart attack and triples risk of stroke. A more immediate consequence for patients, who may go years without truly restorative sleep, is severe daytime sleepiness that profoundly impairs their quality of life.
The condition can almost always be successfully treated with the machine that Parthasarathy’s patient swore by, which streams air through the nose to keep breathing passages open. Yet less than half of those prescribed CPAP use it regularly.
"It’s not like taking a pill,” Parthasarathy says. Patients must get used to a mask that blows air into their nose all night long— “not the most comfortable thing.” Proper fitting and adjustment are essential, and the apparatus requires regular cleaning. Users need guidance through any difficulties that may arise.
The complexity of the treatment, Parthasarathy adds, demands a team of healthcare providers working together. The reality, all too often, is fragmented care in which the patient’s needs may fall through the cracks.
"Most people have their sleep study, then they’re shepherded to a medical equipment company where someone with too little training gives them the machine, and out the door they go,” says Adam Amdur, chief patient officer of the American Sleep Apnea Association, a patient advocacy group, and a member of the PCORI-funded project’s Stakeholder Committee.
"Using a CPAP machine takes time, acclimatization. Not everyone gets it right away, and there are sometimes issues with the mask, with the air pressure—if it’s too low, you feel you’re suffocating; too high, the same thing. Call your doctor and you’ll get, at best, five minutes,” he says.
"Someone needs to hold your hand to get you used to it—especially in the first 7, 14, 30 days.” Who better than a buddy who’s been there?
Finding the perfect fit for the patient. (Photo courtesy of Sairam Parthasarathy, MD; Ziemba Photographic Arts)
The Peer-Buddy Approach
Following his earlier patient’s lead and a successful pilot study, Parthasarathy and colleagues designed a program that pairs patients newly diagnosed with sleep apnea with mentors known as “peer-buddies,” experienced CPAP users who can share their success stories, enthusiasm, and practical tips.
These peer-buddies also convey the dire risks of untreated sleep apnea. “It’s one thing to hear it from me, it’s another for a peer to lay the cards on the table,” Parthasarathy says.
In the study, which is well under way, 257 sleep apnea patients from Tucson sleep centers are randomized to participate in a peer-buddy program or receive standard care. Fifty volunteers serve as peer-buddies.
“We cherry-pick them,” Parthasarathy says. “Mentors should be nice people, who can deliver the message consistently. They need an if-I-can-do-it-you-can-too mentality. Seeing someone they can aspire to be, who’s crossed over to the other side, gives new patients confidence.”
Mentors learn the ropes in two hour-long training sessions, and they receive a manual detailing how to educate others on risks of sleep apnea and benefits of treatment.
"I see my role as cheerleader, if the person is doing everything she should," says Nancy Callicotte, who is mentoring two patients. "If she's having difficulties, I'm a resource." One of her patients needed to try a different mask and get the pressure adjusted. "We worked through that," Callicotte says. "It was rewarding to be able to encourage her, to see how well it worked for her."
Callicotte directs patients to seek medical advice when necessary, she says. But she also provides help others can't. "One of my people asked me how my husband felt about my using the CPAP machine—that’s a question she might not ask her doctor or respiratory therapist."
Within the first three months of the study, patients receive two in-person visits from their peer-buddies for hands-on help in getting the CPAP machine to work and eight follow-up phone calls. In the next three months, another eight phone calls provide additional aid, comfort, and counseling as necessary.
And there's more: the researchers added an interactive voice response system to supplement peer-buddy support and coordinate care. If patients have questions, problems, or concerns, they can directly contact their peer-buddy, as well as members of their treatment team—doctors, respiratory therapists, nurse-practitioners, and medical equipment representatives—via voice mail, text, or email. This automated communication process uses cell phones (for which participants are reimbursed) to eliminate the medical office bottlenecks that frequently block patients’ access to their healthcare providers, Parthasarathy says.
One of the mentor's first tasks is to tutor the patient through the intricacies of the voice response system.
Sairam Parthasarathy, MD, discusses his project for providing better support and education on the use of CPAP treatments for patients experiencing sleep apnea. (Video provided by Sairam Parthasarathy, MD; produced by Ricky Bergeron, BIOCOM, University of Arizona)
Continual Improvement
The project, as Parthasarathy describes it, is in "continual improvement" mode, constantly considering and often implementing input from patients, healthcare providers, and others. Eight patients are among the 60-plus members of a stakeholder committee that was assembled before the project started and convenes frequently in small groups.
"Patients have made a lot of suggestions that we've used," Parthasarathy says. Among them: a planner to help patients track their mentor and care-provider appointments and a list of voice-response- system options and codes to contact various team members that is laminated and attached to the CPAP machine.
After six months, Parthasarathy and his colleagues will determine whether their program has made an important difference in patient satisfaction and self-confidence, CPAP machine use, and parameters, like vigilance and quality of life, that would indicate better, more restorative sleep.
Amdur certainly experienced a dramatic improvement. Before he was diagnosed, he could scarcely hold a job, and he wrecked cars repeatedly. In the five years he’s used CPAP, he says, he’s accomplished more than in the 20 years before: “My wife has a new husband; my daughter, a new father. I get up every morning enjoying my life.”
If the peer-buddy program proves successful, the researchers hope to make it broadly available.
While improving sleep apnea care is the immediate goal, such a peer-mentoring/care coordination program might also help people deal with their treatments for other chronic diseases, such as diabetes, heart failure, and HIV, Parthasarathy says.
He adds. "We're already asking patients for ideas about how our project can gain legs and run, about where we need to spread the message."
| On April 13, 2018, we hosted a Periscope interview with Sairam Parthasarathy, MD. (Watch) |
Posted: January 13, 2016; Updated: July 8, 2019
