×

Sharing decisions, engaging patients

BY CHRISTINE KILGORE

Credit: Multiple Sclerosis Center of Atlanta
Patient engagement in one’s disease management has long been hailed across specialties and chronic disease states as a key to better outcomes and care experiences. But what does it mean for multiple sclerosis specifically?
Mitzi Joi Williams, MD, a neurologist in Atlanta who focuses her practice on caring for patients with multiple sclerosis, sees patient engagement as a practice that should be encouraged early on–from the time of diagnosis–and continuously nurtured through high-quality and holistic patient-provider communication, access to accurate information and peer support, and, whenever possible, participation in research.

Adding Grey Completes the Picture

Advertisement

“Patient engagement means having patients involved in every part of the process, meaning testing, choosing [initial] therapies and setting goals, and deciding when it’s time to change therapies—deciding whether a plan is working or not working…It also means that patients are able to bring their issues and concerns about symptoms to us,” said Dr. Williams, who regularly advises patient advocacy organizations and delivers continuing medication education lectures on comprehensive management of MS.

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.”

Patient engagement means having patients involved in every part of the process, meaning testing, choosing [initial] therapies and setting goals, and deciding when it’s time to change therapies—deciding whether a plan is working or not working…It also means that patients are able to bring their issues and concerns about symptoms to us.

Conversation and decision-making about changes in disease-modifying therapies is also often best spread across a couple of visits, she notes. “I may narrow down the options to a few DMTs and then give the patient some literature to read and have the patient come back in a week with questions,” she said. “Patients often need time to research and process information.”

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.

Establishing Rapport, Reliable Information Sources

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.”

So does the use of technology, she said. Electronic records and patient portals, for one, give patients the ability to access and share information with physicians and other providers who may be spread across communities and health systems. This is empowering, but there also can be drawbacks if patients pull up test results or images and draw conclusions themselves without expert interpretation.

“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.

We want patients to be informed, we need them to be informed…but there is a lot of misinformation out there and I caution against people just googling.

Similarly, patients can benefit from advice regarding the best sources of accurate, up-to-date and reliable information about MS. “We want patients to be informed, we need them to be informed…but there is a lot of misinformation out there and I caution against people just googling,” she said. “I also really encourage patients to talk with me about the things they’re reading.”

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.

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.”

Credit: kali9/Getty Images
Support groups can be helpful but don’t necessarily offer a one-size-fits-all solution, she noted. Dr. Williams cares for a large number of African American patients who are relatively young and not yet experiencing as many symptoms as others. (Overall, African Americans have been observed to have a more aggressive course of disease than Caucasian Americans) Some have told her that they haven’t felt comfortable at traditional support group meetings. “They feel badly complaining because they look so well and some don’t have many symptoms,” she said.

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.”

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.

Participating in Research
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.

Enrolled patients also offer suggestions for research questions and provide input on studies proposed by researchers who want to utilize the network’s data. They receive updates on what researchers are learning from all the data. Some are involved in the governance of IConquerMS. And at any time, patients can also get summaries of their own data as well as insight into how their own information compares to that of other people living with the disease. It’s a bridge that connects patients to the research community and to other MS patients, said Dr. Williams, who has been involved with some of IConquerMS’ projects.
And according to Hollie Schmidt, MS, vice president of scientific operations for the Accelerated Cure Project, the entity that oversees iConquerMS, and co-chair of the research committee for iConquerMS, patient input has already shaped the network’s research directions—most notably through the addition of a diet and wellness component to the Real MS study.
Hollie Schmidt, MS, co-chair of the research committee for iConquerMS, a patient-driven research network, says that patient-supplied data and input on research questions is helping shape the MS research agenda.

Hollie Schmidt, MS, co-chair of the research committee for iConquerMS, a patient-driven research network, says that patient-supplied data and input on research questions is helping shape the MS research agenda.

Credit: Courtesy Surachat Ngorsuraches
Hollie Schmidt, MS, co-chair of the research committee for iConquerMS, works with patient advisers like Anita Williams (right) on studying the effects of MS on health and the quality of life, and the steps that patients are taking to monitor the disease.

“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.”

Dr. Williams and Ms. Schmidt both hope that the research network will grow both in size overall and in demographic diversity. The Accelerated Cure Project and iConquerMS recently formed an MS Minority Research Engagement Partnership Network to understand why patients from racial and ethnic minority groups are underrepresented in MS research and what can be done to increase diversity. With a special PCORI “engagement” funding award, one of their first steps was a survey of minority patients.

“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.”

Credit: Hollie Schmidt, MS

Credit: Hollie Schmidt, MS

Hollie Schmidt, MS, co-chair of the research committee for iConquerMS, works with patient advisers like Anita Williams (right) on studying the effects of MS on health and the quality of life, and the steps that patients are taking to monitor the disease.