In IBD, asking patients the right questions – and listening – matters
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“I'm doing fine.” “I'm managing.” “I'm doing okay.”
These are the words I kept hearing from one of my patients who has ulcerative colitis. Before the pandemic hit, every time she came into my office for an appointment, I’d ask: “How are you doing?” On her chart, I could see that her inflammatory markers were up, meaning her symptoms were likely significant. Yet she would tell me: “I’m doing fine.”
So, I changed the question. “How are you getting to work?” I asked. “Oh, I actually don’t drive, I take the metro, because I need to stop multiple times to use the bathroom,” she replied. Bingo! An answer that enabled me to help her.
If I hadn’t changed my question and tried to understand how my patient’s ulcerative colitis was actually affecting how she lived her life, I wouldn’t have known that she wasn’t doing well with her current treatment plan and that it was perhaps time to change courses.
As physicians, our job is to help our patients and that starts with asking the right questions and listening. How can we help our patients live their lives to the fullest if we don’t know what they’re going through daily? How can we recommend the best treatment for each individual patient if we don’t talk to them about specific goals?
This is even more important during the pandemic, when patients might not be fully recognizing the impact that their IBD is having on them because they are managing “just fine” with learning or working from home with a bathroom nearby and within the comforts of their home.
In my two decades of treating patients, I consistently see a lack of open and honest communication as a barrier to optimal patient care.
Here are three questions gastroenterologists can ask to improve their communication with patients, so they can give the patient the best care they need.
What does your typical day look like?
Often, my patients tell me that they believe there is no solution to their inflammatory bowel disease-induced problems, but that doesn’t mean they don’t want solutions. Unsurprisingly, for most patients, the top priority for their IBD care is to reduce their symptoms. Indeed, a recent survey I co-authored, which was sponsored by AbbVie, and presented at the American College of Gastroenterology Annual Meeting, found that most patients with ulcerative colitis or Crohn’s disease most frequently reported diarrhea, fatigue and moderate to severe abdominal pain as problematic symptoms. But while it’s extremely useful to know which symptoms are affecting a patient the most, it’s just as important to understand how those symptoms impact their everyday life.
If you only ask about the symptoms themselves (eg, “How many bowel movements have you had today?”) you may not get the full picture. Whether the patient is too embarrassed to share details, doesn’t want to appear to complain, or simply doesn’t realize how much their illness is affecting their life, answers like “I’m doing fine” aren’t as helpful as “I can’t sit through my son’s soccer game,” or “It’s hard to get my work done because of the fatigue.”
When broaching the topic with my patients, I ask questions like: “What was your life like before your first symptoms started?” “Are there any activities or events you’re missing, worried about missing, or avoiding altogether because of your symptoms?” “What is your daily life like?”
Once we understand how symptoms are disrupting the patient’s life, we start thinking of how we can help that patient in more meaningful ways.
What are your goals? What does a good day look like for you?
There are many treatment options available to people with IBD, 63% of people with Crohn’s disease and 53% of people with ulcerative colitis reported they learned about new treatment options from their health care provider.
Patients rely on our counsel and expertise when deciding on a treatment plan. In fact, nearly four in five people with Crohn’s disease (77%) and ulcerative colitis (76%) describe their doctor’s treatment recommendation as the most important factor in their decision process.
So how do you determine which treatment is right for your patient? While physicians may be thinking about preventing disease progression and complications, our patients are wondering if they’ll miss important life moments like sitting through the bar exam or watching their child receive their diploma because they’re in pain or unable to control a bowel movement. Understanding these patient-centered goals will help a physician decide the best treatment plan for each patient.
How are you feeling? How are you holding up with everything that’s happening right now?
2020 has been a challenging year in more ways than one. Our daily lives have indelibly changed as we know it. When patients tell us they’re feeling anxious, depressed, fatigued or experiencing a lack of sleep, is this related to IBD disease activity, the effect of the chronic illness on mental well-being or is it all compounded by the current environment? Regardless, we need to dig deeper into these questions so that we can find the next best path forward for our patient, whether it’s referring them to a mental health specialist or reassessing disease activity and therapy.
Building a trusting, communicative relationship with each patient often starts with spending more time with them. In fact, 79% of people living with Crohn’s disease and 76% of those living with ulcerative colitis said regular visits with their doctors are very important to them, while over 70% of those with either condition also reported that they want to spend more time with their doctor during each visit. Most patients also expressed that being heard and understood by their doctors was extremely important.
We need to take this feedback to heart. For us physicians, there’s nothing more fulfilling than when a patient tells us that their treatment is helping them get their life back on track. When we open up lines of communication by asking the right questions and spending more time with our patients, we can develop more tailored treatment plans that not only reduce their physical symptoms, but also help alleviate their emotional distress, enable them to get back to work and do the things they love.
Note: Unmet Needs of Patients with IBD: Patient Perspectives on the Impact of Disease on Quality of Life captured insights from 302 people living in the United States with IBD, including Crohn’s disease or ulcerative colitis, to better understand the daily symptom burden of IBD and the resulting impact on patient quality of life. The second survey, Unmet Needs of Patients with IBD: Patient Perspectives on Treatment Experience, was completed by 502 people living in the United States with Crohn’s disease or ulcerative colitis to better understand how treatment choices are made, most desired treatment outcomes, and satisfaction with therapies and primary health care practitioners. Both surveys were distributed to patients aged 19 years or older who self-identified as having Crohn’s disease or ulcerative colitis.
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Charabaty A, et al. Unmet needs of patients with IBD: Patient perspectives on the impact of disease on quality of life. Presented at the American College of Gastroenterology Annual Scientific Meeting (Virtual). Oct. 23-28.
Charabaty A, et al. Unmet needs of patients with IBD: Patient perspectives on treatment experience. Presented at the American College of Gastroenterology Annual Scientific Meeting (Virtual). Oct 23-28.
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