The success of any shared decision-making strategy for MS depends, of course, on the amount and quality of communication between you and your healthcare team. Unfortunately, time constraints and certain habits in how both doctors and patients behave can get in the way of sharing all the information needed to make decisions together. But by knowing what information and questions to bring to your appointments — and how to share them with your doctor in a pragmatic way — you can help start a conversation that leads to true collaboration in your treatment decisions. “When patients keep very detailed logs for unspecified symptoms,” says Dr. Tobin, “they put a lot of effort into that, and the yield is pretty low.” Instead of pages upon pages of symptom logs, he recommends that people with MS bring along a two-page summary of what they’ve experienced since their last appointment. In addition to bringing a summary of your symptoms — including any that may seem unrelated to MS — Mayo Clinic recommends taking the following actions to prepare for your neurology appointment:
Make a list of all your medications, vitamins, and supplements.Bring any new information, like lab scans or test results, from other medical appointments.Write down your basic medical history, including any other conditions you have.Make a note of any recent changes in your life, especially potential sources of stress.List any questions you’d like to ask your neurologist, in order of priority.
Tools for Recording Your Symptoms
If you’re looking for a structured way to record your symptoms, a number of different printable forms are available online. One such form, from the National Multiple Sclerosis Society, lets you rate a variety of possible symptoms on a daily basis on a scale of 1 to 5. Since it records so much information, it’s probably most useful as a way to collect your raw data day to day, which you can then summarize in a different format for your doctor. Another option for recording symptoms is to use a smartphone or tablet app designed for this purpose. One such app is My MS Manager, which was developed by the Multiple Sclerosis Association of America and can track disease activity and symptoms, store other medical information, and generate a number of different charts and reports. According to a presentation on the app at the 2017 Consortium of Multiple Sclerosis Centers (CMSC) annual meeting, users who answered a survey overwhelmingly felt that the app improved their ability to discuss their MS and eased MS management. The CMSC also has its own app to help people with MS prepare for medical appoints. It’s called Pre-Meet: Multiple Sclerosis. The app offers information on MS and what you can expect from doctor’s visits. It allows you to highlight areas of text on MS and its symptoms so that you can discuss them with your doctor. It’s important to include context when keeping records of your symptoms, notes Elise, a teacher who was diagnosed with MS in 2005, and who preferred that we not use her surname. Write down “not just, ‘I’ve been having these numb feet,’” she says, but also “What was the result of it? Are you tripping more? What aggravates it? What makes it better, if anything?”
What the Shared Decision-Making Conversation Looks Like
According to Tobin, doctors bear some responsibility for making sure patients feel they can raise any question or concern they may have. “The main thing is to build an appropriate rapport,” he says. This means facilitating a conversation that goes beyond the standard list of questions neurologists are taught to ask people with MS. “I think if we go in asking just that list, then we may miss the important aspects of the consultation,” Tobin says, noting that he likes to devote time at the beginning of each appointment to understanding the patient’s priorities and goals. It’s important to find a neurologist who will take the time to listen to your concerns, says Laura Kolaczkowski, a medically retired former university administrative assistant from Ohio who was diagnosed with MS at age 54 in 2008 and blogs at Inside My Story and at MultipleSclerosis.net. “I really am of the belief that if doctors just sit and be quiet, and listen to their patients talk, eventually they will hear what they need to hear out of us,” she says. Kolaczkowski considers herself fortunate to see a neurologist whose practice doesn’t rush him too much. “Instead of having to look at the clock to see when we’re done,” she says, “he can look at me and say, ‘Are we done?’”
Prioritizing Your Concerns
Elise emphasizes the need to make clear to your neurologist what current or potential aspects of your disease bother you the most, and which ones you care less about addressing — whether it’s mobility, your energy level, speech or cognitive difficulty, or MS-related pain. The goal, she says, is to help your doctor “think creatively about what’s best for this individual, which maybe isn’t the same thing they tell 10 other people to do.” For example, she says that minimizing big fluctuations in her symptoms is her top MS treatment priority — even if that means accepting certain limitations much of the time. Some people, naturally, will have other priorities, like wanting to be more active at times, even if it leads to greater fatigue later on. It’s also important, Tobin says, to talk to your neurologist about any emotional difficulties you experience because of MS. “We’re not psychologists,” he says, “so I do often enlist the help of some of my psychology colleagues,” including those with a special focus on MS. He has found that these referrals have helped a number of patients adjust to mobility issues and other physical limitations.
Discussing MS Treatment Options
One of the challenges inherent in shared decision-making for MS, says Tobin, is making sure patients have enough information about potential treatments. “It’s hard, because there are 17 disease-modifying drugs on the market,” he says. “That’s a lot of information to discuss in a visit.” For most patients, Tobin gives an overview of drug treatment options, then recommends that they read more about the relevant drugs before arriving at a treatment decision. When doing this reading, he emphasizes, it’s important to consult reliable sources of medical information, and he sometimes steers patients toward specific sources. While great strides in drug treatment have been made in the last decade, “for people who have advanced disability, we don’t have great therapies for that,” Tobin notes. So when patients raise concerns about their disease progression in the context of disease-modifying therapies, he says, it’s important to make sure they have realistic expectations. “The point,” Tobin says, “is to prevent new attacks and new lesions, which is different from preventing the progression of disability, or improving the disability that somebody has right now.”
Full Participation on Both Sides
If you’re willing to put in the time, Elise notes, it’s all right to take the lead in investigating and proposing treatment options for your MS. She did this even before her MS was officially diagnosed by her neurologist, when far fewer treatment options were available. “I had a good reason I wanted to try one thing versus another,” she says, based on each treatment’s efficacy, risks, and side effects. She also researched and proposed switching to a new treatment four years after her diagnosis, which involved coordinating communication between her neurologist and her rheumatologist. Both doctors ended up agreeing that it was a good choice for her situation — since they knew not just her disease characteristics, but also her personal preferences. “People on both sides of the examination table need to know what’s important to the other side,” she says. In making every treatment choice, Kolaczkowski says, it’s important to remember that while your healthcare team plays a crucial role, you’re ultimately in charge of the direction of your treatment. “I would like doctors to solve everything for me,” she says. “But at the end of the day, when I walk out of that office, my MS walks out with me.” Additional reporting by Brian P. Dunleavy.
