Research to Help People with Serious Mental Illnesses Improve Their Health
Lou Mallory has had major depression for more than 20 years. “It got so severe, I couldn’t work,” she recalls. “I lost my insurance for several months. When you’re not feeling well, and your mood is black, it’s a very difficult problem to solve. I’m grateful for family members who stepped in and helped me.”
She now successfully manages her depression, but she knows that not everyone has a support system to help them get through. That’s why she has worked as a peer navigator on a PCORI-funded project to help people with serious mental illness get the health care they need. A peer navigator can help a consumer find a physician, make and keep appointments, get laboratory tests completed, and encourage clear communication between the doctor and patient.
People with serious mental illnesses, such as schizophrenia, major depression, and bipolar disorder, die 10 to 20 years younger than others, according to multiple studies. A primary reason is preventable medical conditions, such as those linked with obesity and smoking. People with serious mental illnesses are more at risk for such conditions and often don’t receive the basic care they need to address them.
“People aren’t dying from exotic illnesses,” says John Brekke, PhD, MS, a professor of social work at the University of Southern California. “It’s chronic conditions that many other people have, but if you’re not seriously mentally ill, you get treated for them.”
Brekke and Mallory work on one of four PCORI-funded studies that together offer strategies to help this vulnerable population. The hope is that identifying new evidence-based interventions can improve people’s quality of life—and even their longevity. These studies have produced results that suggest the methods they’re testing have succeeded in improving the physical health of people with serious mental illnesses.
I started getting people hooked up with insurance if they didn’t have it already, finding doctors, and taking them to their doctor’s appointments. At the beginning, we’re doing things for the client. As time goes on, we step back and observe how they’re doing and coach them when they need it.Lou Mallory Peer Health Navigator
Peers Helping Peers
Brekke and Mallory’s study involves peer navigators: trained coaches who have had, or cared for someone with, their own serious mental illness. The idea of peer navigators isn’t new: they have helped patients with cancer, HIV, and other chronic illnesses. PCORI has funded numerous studies to test whether trained laypeople—often peers—help patients in specific circumstances with certain conditions. (See related story, Between Clinicians and Patients, Trained Community Members May Provide a Key Link.)
When Brekke began considering using peer navigators to help people with serious mental illness, he and an anthropologist held focus groups to find out about people’s experiences getting health care. “The stories we heard were just incredibly moving and deeply disturbing about how people with serious mental illness were treated when they went into the healthcare system. Many of them had given up trying to get health care,” he says. “If they made it to see a doctor, they had a lot of difficulty managing a relationship with a physician, understanding what was going on, communicating, and engaging in follow-up care.”
He thought that support from peers could help. Mallory and other stakeholders worked with him to develop a six-month program, in which peer navigators begin by meeting with patients to assess their health needs and goals. The peer navigators then help patients reach those goals. A big focus is to build skills and empower consumers to self-manage their health care by working alongside them in the community care settings where they receive services.
“I started getting people hooked up with insurance if they didn’t have it already, finding doctors, and taking them to their doctor’s appointments,” Mallory says. “At the beginning, we’re doing things for the client. As time goes on, we step back and observe how they’re doing and coach them when they need it.”
In the study, 76 of the clients—low-income, largely Hispanic/Latino participants with serious mental illnesses—received peer navigation services and another 75 received usual care. (The usual-care group received peer navigation after the study ended.) After six months, the people who received peer navigation used primary care services more and emergency departments less, felt more confident in their ability to manage their health, and had higher quality relationships with their primary care provider.
Their doctors also diagnosed more chronic diseases in these people than in the usual-care group, an important step for people who often have undetected health conditions, the research team reported in Schizophrenia Research.
“I would love to see the program proliferate,” Mallory says. “It’s really effective. It’s not a difficult intervention to do.
Another Peer-to-Peer Intervention, Another Positive Result
Even while Brekke and his team conducted their study in Southern California, another PCORI-funded study tested a remarkably similar program in Chicago, also with low-income Latino people with serious mental illness.
Projects Featured in This PCORI Story
Can People Who Have Experience with Serious Mental Illness Help Peers Manage Their Health Care?
John Brekke, PhD, MS
University of Southern California
Peer-Navigator Support for Latinx Patients with Serious Mental Illness
Patrick Corrigan, PsyD
Illinois Institute of Technology
Using Wellness Coaches and Extra Support to Improve the Health and Wellness of Adults with Serious Mental Illness
James Schuster, MD, MBA
University of Pittsburgh
Increasing Healthcare Choices and Improving Health Outcomes Among Persons with Serious Mental Illness
Chyrell Bellamy, PhD, MSW
Led by Patrick Corrigan, PsyD, a professor of psychology at the Illinois Institute of Technology, this study had a few differences: it was a year long and involved peer navigators taking a more hands-on approach, including accompanying participants to their appointments throughout the year, rather than training clients to manage their own care.
“It’s a big debate in psychological rehabilitation,” Corrigan explains. “Our current model is that, as with any other disability, this service should be provided on an ongoing basis.”
As with the Southern California study, the project in Chicago found that people who worked with peer navigators largely improved on multiple fronts more than people who got usual care, the team reported in Psychiatric Services. They had better self-reported physical health and empowerment, as well as more appointments with clinicians—which could help them avoid emergency room visits. “The ER is both expensive and reactive,” Corrigan says. “We get them plugged in to the primary care program and then walk them around for referrals.”
Joan Cora, a peer navigator who has an anxiety disorder and overcame an eating disorder, says that she witnessed participants’ increased empowerment firsthand. “They became more independent and more confident,” she says. “They know where to go and what to do, and they know their rights. They have options that they didn’t know at first.” (For two patient partners’ experiences with mental illness and with working with Corrigan, see Patients Helping Patients Navigate Serious Mental Illness.)
Getting Care through Integrated Services
The two other PCORI-funded studies have tested ways of integrating mental and physical health care for those with serious mental illnesses.
In one study, led by Chyrell Bellamy, PhD, MSW, an associate professor of psychiatry at Yale University, a community mental health center offers a menu of services. These include health screening, coordination of physical and mental health care, and peer navigation. Researchers wanted to know which elements of the center patients use most and what effects they have. Then, the researchers piloted a peer-led program to help 40 clients who have not experienced improvement in their first year of using the center.
Participants in the peer-led pilot program had fewer psychiatric- and substance-abuse-related visits to emergency departments, decreased alcohol use, improved wellness, increased treatment plan input, and increased treatment satisfaction compared to those who didn’t participate in the program.
People aren't dying from exotic illnesses. It's chronic conditions that many other people have, but if you're not seriously mentally ill, you get treated for them.John Brekke, PhD, MS Professor of Social Work, University of Southern California; PCORI-funded study principal investigator
The other study compared two ways to help people with serious mental illness who receive mental health care at behavioral health homes to stay on top of their care. A behavioral health home is not a residence but a team-based, patient-centered form of care that integrates primary and behavioral health care. But little evidence exists about whether these homes help patients meet the goals that are most important to them, or whether they work well in rural community mental health centers.
Led by James Schuster, MD, MBA, a clinical professor of psychiatry at the University of Pittsburgh, a research team recruited 1,200 adults insured through Medicaid who had serious mental illness and received care at one of 11 rural community health mental centers, all of them with behavioral health homes that focused on wellness. In addition, patients at six of the centers self-directed their health care using a variety of online self-management tools and peer support. Patients at the other five centers used provider-directed care; these patients met with nurses about managing their health care.
After about two years, patients at both types of clinic reported improved mental health, the research team reported in Health Affairs. Participants also had a 36 percent increase in doctor visits after completing the program, suggesting an increased capacity for addressing their healthcare needs.
This project suggests that such patients can improve their outcomes using self-management tools or meeting with nurses. More than 40 practices across Pennsylvania have now adopted the study’s care model.
Across the four studies, researchers’ focus is the same: using stakeholder guidance to test ways of helping people with serious mental illness get the physical health care they need. PCORI’s hope is that results from these studies can inform decision making by patients, caregivers, and providers, ultimately resulting in better health outcomes.
Posted: October 9, 2018
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