potato 2

  • IBD Fundamentals

    In this module, we will explore key aspects of IBD, including its definition and epidemiology as well as diagnosis, treatment, health maintenance, and preventative care. Additionally, we will highlight the crucial role of patient-provider partnerships, shared decision-making, approaches to patient education and empowerment, and efforts to address social determinants of health (SDOH) and racial disparities in IBD care.

  • During this presentation, we will focus on how to enhance our communications with our patients using available data about their disease and management options by reviewing how to convert the information into formats that help them understand the data.

    Presented by Corey A. Siegel, MD, MS

    Learn more
    • [00:29]

      Hello, I’m Dr. Corey Siegel and welcome to IBDIQ, part of The IBD Project by Takeda, where we’re coming together to help enhance expertise in IBD care—right from the start.

      Thank you for joining me in this discussion of shared decision-making and how to employ effective communication with patients during their inflammatory bowel disease, or IBD, journey.

      During this presentation, we will focus on how to enhance our communications with our patients using available data about their disease and management options by reviewing how to convert the information into formats that help them understand the data.


      This data table taken from a retrospective cohort study of patients in a single US, tertiary care center is a great example of a research project, and instructive to HCPs about the impact of time to diagnosis on the risk of developing an IBD-related complication in the 177 patients included in the analysis, 110 of whom had Crohn’s disease and 67 were diagnosed with ulcerative colitis.1 However, the use of complicated graphs or probability data such as odds ratios is not usable when you are talking to patients and helping them make decisions about their treatment. Sharing information and data with patients in this type of format may result in patients struggling to include it into their decision-making process.2

      So for the rest of this presentation, we will focus on how we can communicate appropriately with patients in a patient-friendly manner.

      Effectively communicating with patients using available data involves transforming the information into formats that promote mutual understanding.3 We can do this by avoiding complex terms and using clear language.


      In my experience, small percentages, numbers needed to treat, odds ratios, P values, relative risk, and standardized incidence ratios may not be great ways to communicate data.2,3

      Relative risk ratios can be misleading, but risks expressed as both a percentage and a frequency are a safer way to help patients understand a number.3

      Words such as “rare” and “common” can be misleading, as patients often misinterpret their definitions, leading to a wide range of misunderstanding.2,3

      So thinking about how to communicate data to patients, it's important to understand a typical patient’s numeracy level, which is defined as the ability to comprehend and use numbers.4 Numeracy – or quantitative literacy – is essential for communicating and understanding treatment risks.4,5

      In a survey of 1,009 healthy volunteers in the US, numeracy rates of adults have shown wide variability5:

      42% and 76% of people failed to convert numbers such as 1% to 10 out of 1000, and 1 in 1000 to 0.1%, respectively.

      Similarly up to 25% of people were unable to sequentially rank the risk of 1 in 100 versus 1 in 1000 and 1 in 10.


      You may ask yourself, “Well who are these people? Maybe they don’t have the right education or are bad at math.” However, in a similar study performed with 62 medical students, only 77% answered all 3 numeracy questions correctly.6

      These, and many other studies – many of which are summarized in an extensive review by Valerie Reyna and colleagues in the journal Psychological Bulletin – underscore the need to address numerical literacy when communicating data to patients.7

      Beyond numeracy, another key aspect of shared decision-making is communicating the risks and benefits of management options by presenting only important information in a logical way.7


      How risks, benefits, and outcomes of different management options are presented or described can impact a patient’s decision.8 This well-known phenomenon is known as “framing bias,” where preferences for choices change depending on whether the outcomes are described positively or negatively.

      A good example of the impact of framing effects was demonstrated by Janet Hux and colleagues from Ontario.9

      Utilizing a survey, 100 patients were asked about their willingness to take cholesterol-lowering medication based on relative risk, indicating a 34% reduction in heart attacks, and its absolute risk, reflecting a 1.4% reduction.9

      Interestingly, when patients considered whether or not to take cholesterol-lowering medication, 88% chose to take medication based on its relative risk while 42% chose to take medication based on its absolute risk, even though both options represented the same decrease in the likelihood of experiencing a heart attack.9


      This example illustrates the issues of both numeracy – as the respondents didn’t understand that both measures were equivalent – and framing bias as people chose the relative risk reduction of 34%. Because 1.4% simply didn't sound that attractive to them.9

      In a larger study in patients at Dartmouth, more study participants also chose a treatment based on relative risk versus absolute risk.10

      Clear communication of benefits and risks is crucial, with caution about framing, since it shapes information to influence decisions.11

      The terminology used when discussing a disease or management options can negatively influence patient decision-making.3

      In my experience, certain terms like “serious infection,” “cancer,” and “Black Box Warning” are attention-grabbing and challenging to overlook.

      When communicating with patients, understanding how people perceive and evaluate risk is important to enable contextualization of data.7


      Psychologist Paul Slovic’s work in the 1980s established a paradigm for understanding how people perceive risk.12

      The x-axis represents how much one dreads a specific risk.

      The y-axis indicates how familiar the risk is – in other words, is this something you have heard about or is it completely new to you?

      Risk is classified into four quadrants based on specific traits, spanning from situations perceived as not dreadful to those considered dreadful, with voluntary and involuntary factors aligned along a common axis. The crossing axis encompasses situations that are observable with known/old risks to not observable with unknown/new risks.

      In the 1980s, the most dreadful and newest and not observable risk was about nuclear power. In contrast, downhill skiing is in the top left quadrant, which means that it is a known observable risk that people can control as it doesn’t sound very dreadful, since you can control your speed and destiny. So that is an example of two opposite ends of the spectrum.


      Slovic’s research reveals that perceived risk varies with factors such as observability and knowledge, providing insights into how individuals categorize risks based on personal perceptions.12

      How does Paul Slovic’s risk perception paradigm apply to IBD?

      Dr. Koliani-Pace, myself, and colleagues performed a cross-sectional study of 130 patients from the Dartmouth-Hitchcock IBD Center showing how IBD treatments compared with everyday life events and other medical therapies using Slovic’s paradigm.13

      Patients’ perceptions vary, with items like driving a car in the upper left, low-dread, known quadrant, and terrorist attacks in the lower right, high-dread, unknown quadrant.

      Biologics fall in the middle, being not highly dreadful and between well-known and somewhat unknown.


      Interestingly, patients may perceive steroids as less dreadful compared to biologics. 

      In my experience, patients have diverse perspectives, so understanding their fears and educating them about risks is essential.

      These data underscore the need to consider patient perspectives when discussing medication and disease risks.

      So when I talk with my patients, and they say they’re scared about taking medications, I use this concept of shared decision-making to take into account, understand, and address their perceptions of risk so that we can better communicate relevant data in a simple format. 

      There are a number of tools available to help address patients’ concerns about the risks of different medications.2 Shown here is an example of one type of tool, a risk palette. 

      Descriptive terms alone can result in patients overestimating perceived risks.2 Risk palettes are a useful tool that can enable patients to grasp information numerically and graphically.


      I made this risk palette to address the risk of developing non-Hodgkin's lymphoma when discussing immunosuppressive therapy options with patients with IBD.2 

      In my experience, this concern is common as it is something they may have heard on TV or from friends or read on the internet. When I show this risk palette for lymphoma risk with immune suppression, it is really interesting that patients completely change their stance on how they might feel about risks.

      I do find it useful to start by showing them their baseline risk of lymphoma if they were taking no medications and had no history of IBD or other disease, aka an otherwise healthy person. In the general population, their risk of developing lymphoma is about 2 out of 10,000.14 But if you add an immune suppressive drug, then the risk goes up to about 9 people out of 10,000. I also find that patients will often volunteer that they thought the risk of lymphoma with that drug was going to be much higher. Thus using tools like the risk palette helps them to better understand the size of risks associated with different management options.2


      By addressing all of the principles we discussed today, communication with patients can improve their understanding of their disease and the management options presented. Employing these principles improves the process of shared decision-making.

      Shared decision-making is an approach where clinicians and patients collaborate on available information when faced with making decisions, and where patients are supported to consider options, in order to have informed preferences.15

      Within the shared decision-making process, there are different types of decision-makers:

      Some patients prefer a passive role, where they trust their doctor to make decisions for them.16

      Some patients prefer an active role; these patients prefer to make the final decision about the treatment they receive.16 In my experience, which may echo your own, these patients often are sophisticated and savvy and will come in knowing recent research or with an opinion already formed on what management option they would prefer.


      Other patients prefer a collaborative role, which is in between the passive and active.16 I think this type of patient truly encapsulates the shared decision-making experience where they are open to education by their providers, and then make the decision together about what is right for them at that time.

      A study performed with 516 patients with rheumatoid arthritis or type 2 diabetes examined patients’ preferred role in decisions about medication use for the treatment of their chronic condition.17

      This study found that the largest proportion of patients prefer to have a collaborative role in the shared decision-making process for choosing to start a new medicine, while less than 25% of the patients preferred for their doctors to make all the decisions.17

      Okay, how does this apply to patients with IBD?

      My team conducted a survey of 460 patients with ulcerative colitis from the United States and Australia.18 They were asked a series of questions about the creation of a decision aid for patients making decisions about treatments for their ulcerative colitis, including what level of participation they would like to have in their treatment decision process.


      As you can see from the graph, the majority of these patients expressed a strong desire for a collaborative role in the shared decision-making process with their gastroenterologist when making treatment decisions.18

      As part of the HCP-patient relationship, it may be important to establish a patient’s preference for their extent of involvement in shared decision-making, noting these preferences may change depending on the stage of treatment.17

      Patients may experience decisional conflict as part of the treatment decision process.19

      Decisional conflict is the uncertainty about which course of action to take when choices involve risk, loss, regret, or challenge to personal life values.19 To put it more simply, how comfortable does the patient feel with their decision when they walk out of the office?


      Decisional conflict is a normal response when patients face a difficult decision; however, it can manifest physically as signs of stress and may negatively impact or impair a patient’s ability to make timely and informed decisions.19 To revisit a real-world example of this, a patient’s comfort level – or their level of decisional conflict – may impact their motivation to follow your management recommendations or their adherence to prescribed therapies. This underscores the need to understand the factors – or decisional needs – that can impact the level of decisional conflict within the shared decision-making process.

      Modifiable decisional needs include lack of knowledge, unrealistic expectations, unclear values, and inadequate support or resources.19

      Failure to address and mitigate decisional conflict can pose risks. 


      Patients might encounter uncertainty and hesitation, potentially resulting in decisions with unfavorable balances between benefits and harms, and possibly leading to undesired treatment outcomes like death or significant deterioration in quality of life.20

      One of the goals of shared decision-making is to minimize decisional conflict as much as possible to avoid these undesirable outcomes.20

      Decision support interventions can be used to address decisional needs, which may reduce decisional conflict and improve decision-making outcomes.19 Examples of decision support materials include clinical counseling, decision aids, and coaching.

      Providing patients with the facts and goals of disease and treatment along with incorporating provider input is an essential step in the shared decision-making process.21

      An instructive example of treatment goal disconnect was described in the results of cross-sectional surveys of breast cancer survivors and their providers about their decisions around choice of surgery, breast reconstruction, and adjuvant chemotherapy.21


      In this study, there was significant discordance between provider and patient goals with 71% of providers having the primary goal of keeping the breast, while only 7% of patients shared this view.21 Discrepancies in goals extended to aspects like living as long as possible, with 96% of providers ranking it in the top 3, versus 59% of patients.

      In my opinion, discordance in treatment goals for patients and doctors may contribute to increased decisional conflict for patients.

      As discussed previously, tools that present clinical information about the disease and management options in a format that’s helpful to patients can promote active participation in decision-making. These tools – also known as decision aids – can help prepare patients for decision-making and minimize decisional conflict.22


      In general, the aims of decision aids are to22:

      Provide evidence-based information in a patient-friendly format about a health condition and the benefits, harms, and scientific uncertainties of potential management options.

      Help patients clarify the value they place on benefits, harms, and other uncertainties and guide them in considering which benefits and harms are most important to them.

      And provide guidance on the steps of decision-making and communication with both their care team and family.

      Decision aid formats vary widely as you can see here. Pamphlets and other hard copy handouts are popular, as are web-based videos and other types of digital media I have seen in practice such as CDs, DVDs, et cetera.22

      You may wonder, are decision aids a good idea in your practice? Is there any evidence that they work?

      Decision aids have been extensively studied. In 2017, a systematic review was conducted with around 100 trials and over 31,000 participants to review the effects of decision aids on people making decisions about health treatment or screening.23


      Results showed that decision aids led to greater knowledge, more accurate risk perceptions, improved understanding of options, benefits, and risks, lower decisional conflict, greater participation in decision-making, and fewer patients remaining undecided compared with usual care.

      Reducing the number of undecided patients is crucial for IBD, as many patients hesitate to start treatment due to concerns, fear, and therapy misinformation.24

      When considering management options for IBD, patients need to know more than just the risks and benefits of therapies. They also need to understand the progressive nature of IBD and the potential long-term consequences for uncontrolled disease such as increased colorectal cancer risk or surgery.18


      As some patients with chronic gastrointestinal disorders report avoidance of medications due to “unknown risks and long-term consequences”, it is important to provide the context of what their risks are without treatment.25

      In one qualitative focus group study,25 one participant reported “The only reason I take [my medicine] is because I’m afraid not to. And I realize that I’m increasing my risk of cancer, but my increased risk is less problematic to me than increasing my risk of having to have my intestines cut out.”

      A goal that I have for shared decision-making with patients is to provide them with enough education about IBD so that they are not afraid of their disease, but also provide respect for the significant, irreversible, disruptive nature of bowel inflammation that occurs in the natural history of the disease.

      My team at Dartmouth recently published a study that examined the impact of a shared decision-making intervention for patients with Crohn’s disease on therapy choice.26


      Our shared decision-making intervention program incorporated a decision aid to review the basics of Crohn’s disease and management options and a risk prediction tool.26 To test its impact on the choice of therapy and decision quality, we randomized patients with Crohn’s disease to receive the shared decision-making intervention or to receive the standard of care patient education by their doctor.

      The primary outcome measure of the study was the proportion of patients choosing combination therapy.26

      To put it simply, the goal of this study was to provide proof of concept that utilizing an educational tool impacts the way patients make decisions.

      Looking at the patient characteristics of our study population, you can see that the patients were fairly early in their disease, having been diagnosed within about two years of study entry.26

      Additionally, demographics were similar between groups.26

      For the primary outcome – which was the proportion of patients opting for combination therapy – a higher percentage in the intervention group chose combination therapy compared with the control group.26


      What was really interesting to me, was the contrast in patients opting for no therapy – only 6% in the intervention group chose no therapy, compared with almost 41% in the control group, emphasizing the impact of the shared decision-making tool on treatment decisions.26

      Examining the secondary outcomes of the study, we can see that the shared decision-making intervention group exhibited less decisional conflict as measured by the decisional conflict scale.26 Notably, there was greater trust in providers among those in the intervention group versus the control group.

      The decision aid tools were an asset to patients in understanding their disease and provided them with insight on the risk of disease complications, benefits and risks of therapy, and treatment options.26

      As we have seen, shared decision-making tools, such as educational tools and decision aids, can influence patients' decision-making, fostering informed choices and active participation in healthcare decisions.22


      Patients can benefit from a range of clinical decision-support tools throughout their healthcare journey.22

      See the resources list associated with this learning chapter for examples of decision-aid tools.

      In summary, shared decision-making involves a multi-faceted approach that goes beyond presenting data, and clear communication plays a key role in shared decision-making.18

      Simple graphical tools and decision aids such as risk palettes, coupled with mindful communication, play a pivotal role in enhancing patient comprehension of treatment effects and risks.2,22

      Educating patients fairly about risks and benefits, considering patient preferences, and collaborating with them form the core of shared decision-making. Emphasizing these principles promotes better patient understanding.18

      As healthcare professionals, by working collaboratively, we can foster a healthcare environment that values informed choices and improved outcomes.18

      Thank you for your interest and spending some time with IBDIQ today to help adapt to the evolving care needs of IBD patients.