Every illness has a terrain that an individual must navigate. The line may be straight, with few obstacles: think the time-worn physician’s advice for enduring a common cold: “Rest and drink plenty of liquids.”
By contrast, the path for a person diagnosed with cancer may be rocky and challenge-strewn: side effects from chemotherapy, fatigue, worries about job loss and many others.
Many patients with serious illnesses need more support from their medical providers than a straightforward explanation of their disease and treatments, said Dr. Daniel Matlock, a professor of Geriatric Medicine at the University of Colorado School of Medicine.
He acknowledged the expanding power of modern medicine to treat disease. But he noted an equally strong responsibility for providers: to listen to what patients and their loved ones want from their care. That means helping them make decisions that conform with their values, such as the kind of care and the quality of life they want.
“How do we make sure,” Matlock said, “that we are giving (treatments) to people who really want to go down that path with us and make sure they are fully informed?”
Matlock has pursued that question since he was a resident at the University of Colorado School of Medicine. He now directs the school’s Colorado Program for Patient-Centered Decisions, which is part of the Adult and Child Center for Outcomes Research and Delivery Science (ACCORDS). He and his program colleagues support patients and clinicians with initiatives like iDecide, which offers a host of free, universally available decision aids in areas spanning heart conditions, colon cancer screening, hospice and more.
A broader plan to provide patient decision support
Now the ACCORDS faculty is about six months into a new series of projects to bolster patient decision-making power. The effort, funded by the Anschutz Acceleration Initiative (AAI), focuses on rapidly researching and creating tools to help patients make tough choices about their health, such as considering the risks and benefits of a procedure, managing multiple chronic diseases, understanding the benefits of their medications and other treatments and weighing where they receive their care.
Matlock collaborated with Dr. Russ Glasgow, a PhD professor and researcher with the Department of Family Medicine, in making the five-year funding proposal, which will eventually fund 10 projects. For now, the work focuses on crafting and evaluating decision-support tools in four areas:
- Heart transplant
- Alzheimer’s disease and related dementias
- Carotid artery stenting
- Primary care patients with chronic conditions
An emphasis on rapid development and evaluation of support tools
The ACCORDS Dissemination & Implementation Science Program, which Glasgow heads, is a key element of all four projects. Glasgow’s team works with members of each project to rapidly design, review and adapt accessible materials – booklets, web applications, and questionnaires, for example – that clinics, hospitals, medical offices, and others can use both widely and consistently. Patients, clinicians and community members all make contributions.
“So many interventions are designed and work in the laboratory or very tightly controlled conditions,” Glasgow said. Moved to the everyday world, however, these programs often collect dust, he added. Perhaps they don’t appeal to diverse patient populations, for example. Others may be impractical “to sustain in the face of competing demands and changing clinical priorities,” he said.
The finances of expanding improvement projects present another big barrier, Glasgow added.
“There has been far too little consideration of the cost (of tools and the delivery), from the planning stage to implementation,” he said. For the AAI project, Dr. Liza Creel, with the ACCORDS Division of Health Care Policy and Research, is leading work to manage the economic cost of the decision-support tools that are being developed for implementation.
Patient advisory groups provide input for each of the projects, and a Spanish-speaking patient panel also addresses specific concerns of that community. Dr. Monica Pérez Jolles of ACCORDS and associate professor in the Department of Pediatrics with the University of Colorado School of Medicine, leads that effort.
The goals for each project are the same: help patients and families make informed decisions aligned with their values and situations, Matlock said. However, their strategies differ.
Decision aids for patients considering heart transplantation
This team is developing and testing a decision aid for patients who are candidates for a heart transplant. It is led by Dr. Larry Allen, professor in the Division of Cardiology, and medical director of the Advanced Heart Failure program at the University of Colorado, with support from division colleagues Dr. Colleen McIlvennan and Laura Peters, and ACCORDS research services professional Mikayla Viny.
The effort builds on previous work by Allen, McIlvennan and colleagues that produced an informational pamphlet and video to assist heart failure patients considering left-ventricular assist device (LVAD) implantation.
A national trial of the LVAD decision aids showed that they “improved patient knowledge” and increased “concordance” between their stated values and the care they ultimately received, McIlvennan said.
“I think big picture, we had success in having (the LVAD aid) focused on both patients and caregivers, and so we have modeled that in the transplant decision aid,” she added.
The days when clinicians gave patients terse and hard to understand instructions about their care and moved on are rapidly fading, particularly with life-and-death procedures like heart transplantation, Peters said.
“Health care has shifted toward patient engagement and autonomy,” she said. However, it can be difficult for patients to find accurate and understandable information to guide decisions about their care, she added.
“Even the most conscientious provider may find it challenging to deliver complex guidance during a short visit,” Peters said. “An aid that summarizes accurate scientific information and the pros and cons of different decisions help to provide a cohesive understanding of what transplant is.”
The aid had been through nine iterations as of mid-January, with input from patients and clinicians, Viny said. It aims to explain the long-term risks and benefits of transplantation – not all patients will choose to get one – and also incorporate questions from patient advisors about how to maintain their mental health, she said.
“We’ve expanded on that section in the decision aid,” Viny said.
Road-testing a ‘roadmap’ for dementia care
Matlock leads this project, along with Dr. Laura Scherer, associate professor in the Division of Cardiology, and Dr. Channing Tate, assistant professor in the Division of Internal Medicine. It is modeled on a “roadmap” for coronary artery disease patients developed by Scherer and two colleagues to address patients’ misconceptions about the disease and encourage healthy behaviors.
Matlock and his team are following that lead with a roadmap to help patients with dementia and their caregivers anticipate and address “domains of care,” such as types of dementia, how it progresses, home safety, medication storage, self-care and more. Representatives from the Alzheimer’s Association have provided input, along with a patient panel and clinicians.
“We’re trying to make sure we use gentle language that talks about some of the tough things that could happen in the future in a very patient-centered and acceptable way,” Matlock said.
Carotid artery stenting: Meeting a (possible) demand for shared decision-making
Dr. Christopher Knoepke, assistant research professor in the Division of Cardiology, leads the project with Dr. Michelle Fullard, assistant professor in the Department of Neurology. It addresses a proposed mandate by the Centers for Medicare and Medicaid Services.
The mandate would require that providers “engage in a formal shared decision-making interaction” with patients before they undergo surgery to open narrowed carotid arteries with stents. The discussions must include risks and benefits of the stenting procedures and other options, including carotid endarterectomy to surgically remove plaque from the artery, and medical therapy.
The ACCORDS team is preparing for the proposed mandate by developing and testing a decision-making aid for patients with symptomatic carotid artery disease, said Dr. Kelsey Eklund, assistant professor in the Department of Neurology. That’s vital because these patients and their caregivers must absorb detailed information about multiple treatment options, sometimes after a stroke or another life-threatening event.
Eklund said the decision aid, now being developed and revised, encourages patients to ask their clinicians important questions, such as why they are recommending a procedure, what they can expect from their recovery, and how to reduce their long-term risk of stroke and other problems.
“For me and our group, (the work) is about making our patients feel better about their decisions, and feel like they fully understand what they are getting into or what they are saying ‘no’ to,” she concluded. “We also have an opportunity to highlight that while it is our recommendation that you have a procedure, you can ultimately decide not to have it if it is not aligned with your goals, values and situation.”
In some patients, carotid artery disease can be asymptomatic. That requires a separate decision aid, Eklund said. The ACCORDS team is collaborating with Dartmouth Health, which is working on a guide for those patients. Dartmouth Health has done significant research and work on creating an aid that can be used by different specialists – cardiologists, neurologists, neurosurgeons and interventional radiologists – to discuss carotid artery disease with patients.
Helping primary care patients prioritize and improve their health risks
Dr. Amy Huebschmann, a primary care physician and professor in the Division of Internal Medicine, leads this project along with Dr. Glasgow. Huebschmann said researchers at the National Academy of Medicine have for the past few years been “digging into to addressing what matters most to patients across several dimensions of health risks.” That’s a tough task in a relatively short clinic visit that leaves little time for patients to ask questions, get feedback on progress they are making with their health and set top goals for improvement, she said.
The dilemma deepens for clinicians treating patients with chronic conditions like diabetes. The most effective approach, Huebschmann said, is to address “the whole health of the patient.” That includes not only their symptoms, but also lifestyle behaviors, like smoking, and “unmet social needs,” such as getting healthy food and reliable transportation.
But how to do that in a time-restricted environment when patients typically have several risk factors, and may also be managing multiple chronic conditions?
“We’ve been doing workshops with clinicians and patient advisory groups to talk through questions that are part of these ‘whole health’ attributes,” with the UCHealth Patient Experience team also providing input, Huebschmann said. The goal: identify the risk factors that are most important to address and how many questions it is feasible to include.
The work led to developing a web application for patients to complete before a clinic visit. Patients identify their most important health concerns and convey them to their primary care team, increasing the amount of productive time available.
“Getting this information into (patients’) charts will allow clinicians and patients to review together what matters most,” Huebschmann said.
This web application will be modeled on the earlier MyOwnHealthReport website, which has also been developed and tested to address whole-person care by Huebschmann and other collaborators.
“Past trials have shown that earlier versions of MyOwnHealthReport helped patients set goals, increase their activation and interest to work on them, as well as make short-term changes in health behaviors,” Huebschmann said.
As for primary care clinicians, Huebschmann said that her team has heard “loud and clear” that they want the information that patients submit to be easily accessible within the UCHealth Epic electronic health record (EHR). To that end, the team is working with the UCHealth Patient Experience team and their information technology specialists to meet that goal of creating a “frictionless interface” that allows providers and patients to make the most of their time together, she said.
“We really want to address what matters most to patients and clinicians,” Huebschmann said. “We know it’s not going to be the same for every patient. It’s another type of precision medicine.”
McIlvennan, working with patients considering the life-and-death decision of heart transplant, would concur.
“Rarely are things black and white in health care,” she said. “Patient preferences, priorities and values should play a role in treatment options that are right for a specific patient.”