Sharing decisions, engaging patients
BY CHRISTINE KILGORE
The shared decision-making that’s congruent with patient engagement is crucial for navigating the risks and benefits of disease-modifying therapies and the treatment of exacerbations and primary symptoms (those directly related to demyelination and axonal loss), but it can too easily and too often be limited to these components of care. Too narrow a focus during neurological consultations can ultimately discourage patient engagement, Dr. Williams said.
“It can be easy as a neurologist to get caught up in disease-modifying therapies (DMTs), especially since we have so many options now, and to focus on MRIs and other tests—and maybe not focus as much on symptoms, especially those ‘silent’ symptoms that patients might feel a little uncomfortable talking about,” such as problems with sleep, cognition, bladder and bowel function, sexual function, and mental health, Dr. Williams said.
“But each patient may have at least 4-5 different areas that potentially can be addressed in addition to the overall big picture of medications and [limiting disease progression],” she said.
Dr. Williams’ strategy in her practice at The Multiple Sclerosis Center of Atlanta has been to encourage patients to come to each visit with a list. “Sometimes if the list is very long, we may not be able to get to everything—we may have to do it in a couple of visits,” she explained. “But we at least try to get through the top 2-3 things they want to address…We need to make sure we know what they want to accomplish, and that this aligns as much as possible with what we’re trying to accomplish.”
In addition to a list, she also encourages many of her patients to bring someone with them to their visits—someone who sees or talks with them regularly, like a spouse, a best friend, a child or a parent. “Sometimes the care partner will recognize some of the silent symptoms, as well as other symptoms that may be worsening that the patient may not recall,” she said. “Secondly, they may less shy about bringing up symptoms.”
The Consortium of Multiple Sclerosis Centers, which with Dr. Williams has been engaged, addressed the importance of prioritizing symptoms and individualizing care in a report on “Symptomatic Care and Beyond” (Int J MS Care 2017;19:42-56). “Defining and understanding symptoms is the first step toward a goal of optimal function and improved quality of life,” it says.
Dr. Williams believes that compassionate communication—communication that both recognizes that “MS is a life-altering diagnosis for many people” and that fosters a sense of hope—lays the groundwork for successful patient engagement. This starts at the time of diagnosis.
“Many patients come in with a diagnosis and say, ‘Dr. Williams, there’s no cure,’” she said. “We try to reframe that by talking about how most diseases are managed, not cured. And we talk about how it’s kind of a revolutionary time for MS—that there are a lot of options for treatment, more than we had even 5-6 years ago. This sets the tone for the doctor-patient relationship. It absolutely helps motivate patients to be engaged.”
“I encourage patients to be involved in the process [of accessing their records and test results], but to also recognize that they’re seeing a doctor because hopefully they trust their knowledge and their experience,” said Dr. Williams, whose patients have incorrectly assumed severe liver damage or brain damage based on test results/images that they accessed themselves outside of medical visits.
Some pharmaceutical companies have developed web sites with high-quality general information about MS, and their nurse hotlines for addressing medication questions appear to be responsibly run and helpful for some patients, Dr. Williams said. “I might direct patients to some of these sites, but I generally recommend more neutral sites run by the MS Foundation, the National MS Society and the MS Association, as well as a website called MS Views and News.”
Mitzi Joi Williams, MD, believes that full patient engagement is vital for optimal MS care, and that physicians play a key role in encouraging and nurturing this engagement.
Credit: Multiple Sclerosis Center of Atlanta
(The latter was founded and is run by a patient with MS with the help of medical advisors and other professional staff.)
Dr. Williams also stresses to her patients the value of peer support from within the MS community—“even if it’s just one friend with MS who understands exactly what’s going on, whom you can relate to and be encouraged by.”
Dr. Williams encouraged several of her patients to serve as leaders of a new support group for African American women. They recently held their first meeting with about 20-25 women–and they invited Dr. Williams to come. “It was amazing,” she recalled. “One young woman walked in and started crying because, she said, she never saw that many people in a room whom she could identify with.”
Dr. Williams sees this group as a pilot for additional tailored support groups. “I’m looking to do this too with parents of young children, and with some of my male patients.”
Clinical trials are one form of important research, but patient-driven, patient-centered data collection and research can be equally important. Certainly, said Dr. Williams, participation in research of any type–and particularly the latter type–can empower patients in ways that solidify and even deepen their engagement in managing their own disease.
MS is one of 20 conditions currently being studied through a Patient-Powered Research Network (PPRN) funded by the national Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit organization authorized by Congress in 2010.
Approximately 4,500 patients with MS are enrolled thus far in the MS-PPRN known as iConquerMSTM (https://www.iconquerms.org/). As participants in the research network they complete surveys every 6 months for Real MS–an ongoing, 4-year-old study of the effects of the disease on health and the quality of life, and the steps patients are taking to manage these effects.
“Patients don’t think that medications are the only approach they should be engaging in—they’re interested in diet, exercise, and wellness activities,” Ms. Schmidt said. “We’re constantly building an evidence base about how people are doing with their MS and what they’re doing to manage or influence their outcomes.”
“Interestingly enough, we learned that minority patients really do want to be involved in research,” said Dr. Williams. “They don’t know where to find out about studies, however, or they aren’t asked about becoming involved.”