By Melinda Young
A chronic disease self-management program has proven to work well for a rural population, both before and since the COVID-19 pandemic.
“We reverted to remote delivery modes in 2020, as did everybody else,” says Kristin Pullyblank, MS, RN, a research scientist with the Center for Rural Community Health at Bassett Research Institute in Cooperstown, NY. It is important to offer a resource for people to work on their disease self-management skills.
Pullyblank and colleagues reviewed data from March 2017 to November 2019. They found the diabetes self-management program’s (DSMP) completion rate was nearly 75%. The chronic disease self-management program’s (CDSMP) rate was 79.4%.1
“We wanted to see if this program was effective for folks with depression and anxiety,” Pullyblank says. “Did they benefit as much as other people? We found they did.”
In a separate study, Pullyblank and colleagues looked at the Patient Activation Measure (PAM) among participants with a history of depression and/or anxiety. They found overall PAM scores improved significantly among those who completed the six-week program, showing it could improve patient activation regardless of whether a person is diagnosed with depression or anxiety.2
“A lot of healthcare systems are interested in PAM because research has shown that patients who are more active in their care end up having better outcomes,” Pullyblank says. “What our analysis showed was there was an increase in patient activation after the program.”
People enrolled in the program included those with chronic pain, arthritis, lung disease (such as COPD and emphysema), heart disease, diabetes, high cholesterol, and high blood pressure.
“The program is disease agnostic,” Pullyblank says. “The self-management program works for [many] diseases. We also have a diabetes-specific program and a chronic pain program.” They also launched a new program for cancer survivors, she adds.
Living Well was adapted from Stanford University and is licensed through the Self-Management Resource Center.3 The six-week program is led by peer facilitators. Patients learn how to master skills, and receive support persuasion from the peer leaders.
“To build self-efficacy, people do that through mastering skills,” Pullyblank explains. “There’s support persuasion, where peer leaders use gentle persuasion and reframing belief.”
They talk about the symptom cycle. Some symptoms, like pain and difficulty breathing, could be the result of stress causing muscle tension.
“It could be that having limited activity is causing distress or a lack of sleep,” Pullyblank adds. “All of these symptoms react with one another, and they all interact with one another.” For example, patients with diabetes are taught to consider how their blood sugar levels could be affected by their emotions.
Living Well is designed to be led by peers who do not give advice. Their role is to help people learn to self-manage their symptoms. They also give patients confidence and help them develop problem-solving skills. For example, the last session of the six-week chronic pain course involved a review of what participants learned and what they accomplished.
“[Before the program], we had an individual who said, ‘I was considering ending my life — not because I wanted to die, but because the pain was just too much,’” Pullyblank recalls. “She said this program really reset her and the way in which she thought about pain.”
The patient described this reset button as one of the most powerful experiences of her life. The group process of decision-making, problem-solving, and thinking differently about pain and what one has control over and how to pace oneself were invaluable to managing her pain.
“This allowed her to reframe her condition,” Pullyblank says.
When people focus only on pain, they feel it more acutely. The chronic pain program teaches people how to use distractions to redirect their attention.
“We say, ‘Your radio station can only tune into one thing at a time,’” Pullyblank explains. “If we use distraction, then how does that impact your pain level?”
Distraction techniques can include counting sheep, playing a game, and then rating pain afterward. Once people do that, they realize they can lower their pain level.
“We also ask them to make an action plan for the week,” Pullyblank says. “It can be something very small, like a smart goal — something action-oriented and achievable.”
People often become overwhelmed if they think they have to change their whole lifestyle. But if someone helps them make only a few small steps, they find it is achievable.
“One of my plans during teaching the diabetes course was to suggest someone switch from two teaspoons of sugar in their coffee to one teaspoon for a week. The next week, they could try no sugar,” Pullyblank explains. “This makes people think they can succeed in taking small steps.”
The goal is for people to develop an action plan they are confident they can achieve. Even if the person’s action plan is not ideal, it is important to support them and nudge them toward an even better plan next time.
“This is for them,” Pullyblank says. “It’s always something they want to do, so they decide.”
The program’s group sessions included at least eight people, and up to 18 people when they were held in person. After switching to virtual meetings during the pandemic, the sessions included six to 12 attendees. There always were two facilitators.
Even by mid-2022, the program continued on Zoom due to struggles with COVID-19. One benefit is the virtual meetings have made it easier to staff facilitators.
“We’ve built this consortium of peer leaders over a six-county area so we can substitute for one another if someone is sick,” Pullyblank says. Some people want to return to in-person meetings. The program also provides phone support and conference calls, as needed.
Medical self-management is a necessary complement to medical care. “Some providers in the biomedical system say self-management is compliance: ‘Are you able to comply and adhere to recommendations of the provider?’” Pullyblank says. “Whereas some people are more comfortable saying, ‘I need to learn how to live well with my condition.’”
Living Well is self-management-oriented, not medically oriented. “What’s unique for Bassett and for our rural areas is we’ve integrated this program into the clinical setting and have providers referring to this,” she explains. “We have a core team that bridges the clinical setting with community-based partners.”
Once clinicians refer patients to the program, the Living Well team takes over. “They just need to refer, and we take care of it,” Pullyblank says.
When patients completed the course, this was noted in their electronic health records, which created continuity between the intervention and medical providers. This differentiated it from similar programs offered by community organizations such as senior centers and agencies directed toward older populations. It ensures the program is offered systematically and not haphazardly.
“There’s consistency, and it allows for sustainability,” Pullyblank says. “We’ve worked really hard to integrate it into the health system.”
So far, the long-term results look good. Although data have not been published, early outcomes suggest people continue to improve even six months after completing the chronic pain program.
“Something like this is hard to prove to the medical community because it’s not using high tech and it’s not drug-based; it’s a cognitive-behavioral intervention,” Pullyblank says. “It’s a relatively low-cost part of the solution, and it’s an extra resource for people.”
The health system held fall and spring sessions, running as many as 25 concurrent in-person sessions in 13 locations. Initially, funding came from grants.
“We were creative with braiding funding from four to five funding sources at the local, state, and federal levels,” Pullyblank says. “Right now, funding mostly is through the Rural Health Network Development grant, and there are some internal funds, too.”
REFERENCES
- Pullyblank K, Brunner W, Wyckoff L, et al. Implementation of evidence-based disease self-management programs in a rural region: Leveraging and linking community and health care system assets. Health Educ Behav 2022;10901981221078516. doi: 10.1177/10901981221078516. [Online ahead of print].
- Pullyblank K, Brunner W, Scribani M, et al. Recruitment and engagement in disease self-management programs: Special concerns for rural residents reporting depression and/or anxiety. Prev Med Rep 2022;26:101761.
- Self-Management Resource Center. History. 2022.