Connecting the Dots
Experts from the U-M Medical School, School of Public Health and VA Center for Clinical Management Research are working together to take on multi-chronic conditions, an increasingly complex issue that requires comprehensive, coordinated solutions.
It's mid-February in Ann Arbor, and Maggie Mahoney has just been released from University Hospital for the second time since Groundhog's Day. Her internal bleeding — a complication of nonalcoholic steatohepatitis-related cirrhosis of the liver — prompts most of her hospitalizations these days.
It was the celiac disease, Mahoney says, that ultimately "did her liver in."
Mahoney also has diabetes, and she took eight pills before she ate this morning, followed by 10 after her meal. She will take another five at dinnertime and then three at bedtime. She has plans to do the dishes and laundry, but that will take her at least two days due to anemia-related fatigue. With whatever energy is left over, Mahoney will take her devoted Chihuahua-mix named Kiwi for a walk, even though her chronic pain and depression make it nearly impossible to do so.
"It's an up-and-down battle," Mahoney says. "Some days … I just don't want to do anything. Like today, I could just sit in my chair all day. And I just might."
Patients like Mahoney who live with multiple chronic conditions, or MCC, must manage not only their symptoms and medications, but also difficult lifestyle changes and bureaucratic barriers surrounding access to appropriate health care. According the Centers for Disease Control and Prevention, "as a person's number of chronic conditions increases, his or her risk for dying prematurely, being hospitalized and receiving conflicting advice from health care providers increases."
MCC has another kind of arduous impact on clinicians, researchers and the U.S. health care system as a whole.
The CDC estimates that 71 percent of all health care spending in the U.S. is associated with care for Americans who have more than one chronic condition. People with MCC account for 93 percent of total spending among Medicare fee-for-service beneficiaries.
For these reasons, researchers and clinicians at the University of Michigan and beyond are seeking new approaches and interventions to better understand and treat the MCC population. U-M experts from internal medicine, general medicine and family medicine; the School of Public Health; gerontology; and the Ann Arbor Veterans Affairs Healthcare System, or VA, are all working together toward solutions.
"There has been a growing recognition over the past decade that patients who have multi-chronic conditions are actually the norm," says John Piette, Ph.D., a professor of health behavior and health education and of internal medicine; director of the U-M School of Public Health's Center for Managing Chronic Disease, or CMCD; and research career scientist at the VA Center for Clinical Management Research, or CCMR. "There's a growing recognition that this is a population we have to do a better job serving."
Individualizing the Population
Traditionally, medical research has included a focus on designing clinical trials that concentrate specifically on one disease, and people with multiple other conditions often are not eligible for those studies. For example, a trial for a diabetes medication might exclude people who have other health issues that could impact the results. This is especially true for the older population, even though they represent the highest percentage of MCC patients.
"If you have older adults with memory problems and they're not able to participate in the intervention, that's a problem," says Christine Cigolle, M.D., an assistant professor of family medicine and of internal medicine, and research assistant professor at the U-M Institute of Gerontology. "Or if they're on multiple medications that might bring some ambiguity or confuse or complicate the intervention, that's a problem. So sometimes it's just easier not to include older adults."
Cigolle says this way of thinking can result in clinical practice guidelines that don't reflect real-world practice. But patients with multiple conditions deal with many other issues that can prevent them from getting a good health outcome. Additionally, what's considered a good or desirable outcome for the MCC population might be different than for people with a single condition.
"We've done a nice job in the medical field of identifying particular measures we can use to track outcomes for a specific chronic disease," says Maria Han, M.D., an assistant professor of internal medicine who studies population management for MCC patients. "However, we don't commonly use outcomes that are meaningful in measuring the entirety of the multiple conditions that a patient may have, or the interaction between those conditions."
Fortunately, new trends in research are encouraging the design of interventions that treat people, not conditions, says Mary Janevic, Ph.D., assistant research scientist in health behavior and health education at the School of Public Health. More researchers are using pragmatic trials to better approximate the real-life conditions in which a specific treatment or intervention would be used. For example, with the MCC population, researchers might expand their trials to include subjects with multiple-morbidity to come up with evidence-based interventions that reflect those patients.
There's also been a push toward prioritizing research outcomes that patients care about — such as quality of life.
Eve Kerr, M.D., the director for the CCMR at the Ann Arbor VA, believes the solution lies in customizing interventions to a patient's specific needs, including their co-morbidities, functional status and preferences.
"We have to take a precision management approach to multi-chronic disease," says Kerr, also the Louis Newburgh Research Professor of Internal Medicine. "We need to use all the information we have available to us right now to tailor treatments and management plans, and we're not doing that. We have the ability to do that, but we have to apply it more rigorously and test in different ways that also incorporate patient preferences for care. So it's challenging, but it can be done."
MCC in the Clinic
Several research projects and initiatives at the UMHS and VA are proving that individualized care plans for patients can indeed help. An example researchers often point to is the Michigan Primary Care Transformation Project, or MiPCT. Michigan was one of eight states selected by the Centers for Medicare and Medicaid Services, or CMS, to participate in a demonstration project designed to strengthen primary care using Patient Centered Medical Homes, or PCMH, to take care of complex patients. These "homes" are essentially hubs within a primary care practice that give patients easy access to
a coordinated team of health professionals, including physicians, nurses, pharmacists and social workers. A PCMH also offers extended hours and the use of patient registries to track testing and outreach efforts.
"The major intervention that came out of MiPCT is that a chronic care manager, or care navigator, is now embedded in each primary care practice at the U-M," says Kathryn Harmes, M.D., assistant professor of family medicine and director of U-M's Department of Family Medicine PCMH. A care navigator is a higher level clinical professional, most often a nurse or nurse practitioner, whose sole responsibility is to manage a panel of patients with MCC.
Project funding has also been used to support other clinicians at the PCMH, including dietitians and physical therapists. This team-based approach has been shown to reduce hospital readmissions and ER visits, and increase quality and preventive measures. For the first three years, MiPCT has been cost-neutral, saving as much money as CMS invested, and Harmes anticipates that it will show significant savings in the future.
Patient Centered Medical Homes at the U-M also help identify patients who may need even more intensive care. Care navigators will often refer the most medically and socially complex patients, such as Mahoney, to the Complex Care Management Program, or CCMP, led by Brent Williams, M.D., associate professor of internal medicine, and Donna Fox, R.N. The CCMP coordinates care for patients with the highest level of need — nearly all of whom have multiple conditions — to reduce unnecessary treatments, readmissions, handoffs and wait times that are harmful to patients and costly for the Health System.
If the Health System can identify high-cost, high-utilization patients, intensive efforts like the CCMP are more likely to be cost-effective solutions. However, applying these types of efforts to a broader population could lead to less return on investment of resources. So the goal is to target patients with multiple hospitalizations, emergency room visits, etc., through Health System data and referrals, and provide more focused interventions.
To this end, the CCMP partners with each patient's medical home, community providers and support agencies to identify, provide and coordinate all needed services across multiple locations. Williams says most CCMP patients are on Medicaid, Medicare or are uninsured, and many of them have accompanying chronic mental illness or self-management challenges.
Depression and chronic pain have a significant impact on people's day-to-day lives and how they manage their conditions. —Mary Janevic
"It's this intersection between medical conditions and lack of other resources that is really where we work," Williams says.
Mahoney's CCMP care managers helped provide household furniture when she moved from her home in Gibraltar, Michigan, to an Ann Arbor-area apartment so she could more easily get to her medical appointments. Additionally, they are in the process of arranging for occupational and physical therapists to assist her at home with completing chores and weight management.
Complex care managers also stepped in when Mahoney's depression and chronic pain began to worsen. They referred her to the Tailored Mental Health Management Support for Primary Care, or TaMMS, program, which provides flexible, coordinated and affordable U-M services for patients with depression and anxiety. Depression and pain are the most common co-morbid conditions, and they are increasingly driving the MCC research agenda.
"When researchers start thinking about multi-morbidity, it gets complicated when you consider developing interventions for people who have different combinations of multiple conditions," Janevic says. "It may be more straightforward to think about a specific co-morbidity that could be present with any number of conditions. Depression and chronic pain have a significant impact on people's day-to-day lives and how they manage their conditions. So if we can get people to self-manage their pain better, would that translate to better outcomes for their other health problems as well?"
The Bigger Picture
Self-management is the foundation of care for all MCC patients. Self-management strategies involve sophisticated forms of counseling to encourage patients to take on more and more of their own care. Engaging patients in this way can help them achieve a high quality of life while also keeping the cost of care low.
Piette and his colleagues at the Center for Managing Chronic Disease focus much of their work on those low-cost approaches. A flagship example is the CarePartner Program. Patients in the CarePartner Program receive regular, scheduled health and behavioral monitoring through telephone calls with tailored advice about disease self-management. They can also designate informal caregivers, or "CarePartners," often a family member or friend, to receive structured reports via email or phone about their patient-partner's health and how the CarePartner can help.
Anne Marie Rosland, M.D., assistant professor of internal medicine and research scientist at CCMR, has seen how effective informal caregivers can be. Up to three-quarters of people with a chronic disease have someone in their family who is regularly involved in their care. Rosland sees these family members as untapped resources who can boost patients' success at caring for themselves. They're already trying to help, so they can be ready partners. Mahoney's sister, for example, will often help her with grocery shopping, making sure she gets the foods she needs to manage her diabetes.
Rosland has also seen informal caregivers improve communication between patients and their physicians. Patients who have family members or friends accompany them to appointments tend to give and understand more information, so they are more engaged and involved in their care.
"What we're looking at now is which patients with chronic conditions benefit the most from informal caregivers, so the health care system would want to prioritize reaching out to their family members," Rosland says. "By coordinating self-management support from health care professionals and family members, we could give patients with complex chronic conditions the help they need to successfully manage their care."
What Rosland and many of the other researchers and clinicians agree on is that there is still a lot of work to do when it comes to addressing MCC — from the ways patient population data is collected and analyzed, to clinical and health system approaches to intervention. But it's a challenge that seems to stir tremendous patience, perseverance and innovation — both for the U-M and for patients like Mahoney.
"It's been a long journey, and it's still going," Mahoney says. "I tell myself to hang on and be strong. Have faith in God. And cry when you have to … They're working on it."