Managing Uncertainty in Multiple Sclerosis

Living with multiple sclerosis (MS) is synonymous with living with endless uncertainty, including the lack of clarity on

• the individual’s disease progression
• how MS will interfere with meaningful activities
• whether and which disease-modifying therapy will be effective
• whether the individual will experience side-effects, including severe issues such as progressive multifocal leukoencephalopathy (PML)
• and much more.

Humans generally dislike the presence of uncertainty or uncontrollability and are inherently motivated to resolve uncertainty when it is present. As a result, the magnitude and breadth of uncertainty experienced by people living with MS can be a constant uncertainty-driven challenge that may pose a threat to function, well-being, and quality of life.

This review briefly covers 3 areas central to MS-related uncertainty. The psychologic perspective on the challenge of uncertainty, including uncertainty in the context of MS, is first presented. Next, interventions in development to help people living with MS optimize their ability to manage MS-related uncertainty are covered. Last, recommendations for nonpsychologists on navigating MS-related uncertainty in clinical practice are given.

The Challenge of Uncertainty

Uncertainty, uncontrollability, and the difficulties humans have coexisting with those constructs is prevalent throughout the psychology literature. In general, humans dislike the presence of uncertainty and are motivated to resolve uncertainty when possible.¹ When a true resolution of uncertainty is not possible, some individuals attempt other strategies. For example, they might avoid the source or reminders of uncertainty, as this provides relief from the associated distress. This, of course, is a temporary solution, as the uncertainty itself does not go away with avoidance. In fact, in most contexts, avoidance is also understood to contribute to a worsening of the associated distress. Alternatively, individuals might try to control the uncontrollable by attempting to find solutions to the challenge; this most commonly manifests as worrying. Although the pursuit of solutions gives an individual a sense of control, the endless pursuit of solutions for a problem without a solution ultimately serves to consume time and adds to distress. It is these strategies—avoidance and worry or control-seeking behaviors—that have come to the forefront in the literature focused on psychologic distress.

The extent to which people can tolerate the presence of uncertainty resides on a continuum, with the individuals who struggle the most to coexist with uncertainty considered to be high in intolerance of uncertainty (IU).¹ As the term suggests, IU focuses on the difficulty individuals may have coexisting with (or tolerating the presence of) uncertainties in their lives. Individuals who score high on measures of IU demonstrate “a cognitive bias that affects how a person perceives, interprets, and responds to uncertain situations on a cognitive, emotional, and behavioral level.”² Being high in IU can translate to the use of more maladaptive or unhelpful coping strategies, placing individuals at greater risk for a variety of negative outcomes related to their well-being. For example, individuals high in IU are more likely to engage in the avoidant, control-seeking, or worry behaviors previously described. Not surprisingly, prior studies have demonstrated that individuals high on IU are at greater risk for anxiety and depression.³

A previously published comprehensive literature review suggests IU may also increase the presence of maladaptive or unhelpful behaviors in medical contexts.⁴ For example, individuals who score higher on measures of IU have higher levels of health anxiety, feel more out of control, view their health condition as more threatening, and exhibit a variety of anxious behaviors, such as excessive internet-checking about their health condition of concern.^5-13 With that literature as a foundation, our team has recently begun to research the intersection of IU with coping with MS.^4,14 Although this work was motivated by the notable presence of uncertainty in people living with MS, our specific concern was that individuals high in IU would be more likely to engage in avoidant or control-seeking behaviors and, therefore, less likely to engage in behaviors that optimize the management of the situation as it currently exists. In prior publications on this topic, we have discussed that this can at times result in conflicting challenges for those living with MS. For example, people with MS often choose to ignore the possibility of future MS progression. This avoidance is often adaptive or helpful but, at the same time, if individuals ignore their MS fully, they may miss opportunities to engage in strategies or pursue treatments that could positively affect their function or quality of life. In line with this hypothesis, our research suggests that being high in IU is associated with lower quality of life in individuals newly diagnosed with MS.¹⁵

Psychotherapies to Address IU in MS

A small number of intervention studies have shown the effects of directly or indirectly intervening on IU both on generalized anxiety¹⁶ and as a mediator of change in psychotherapies.¹⁷ Our team has researched adaptation of different psychotherapies that could positively impact IU in people with MS. Building from our observational research on individuals newly diagnosed with MS,¹⁵ our intervention research has focused on the critical, yet shapable, adjustment period that starts individuals on a trajectory for coping with MS.

The 6-session intervention we developed sought to leverage established psychotherapies while attending to the nuances of MS.¹⁴ In line with our perspective on the balance between seeking acceptance of the presence of MS and continuing to push forward on meaningful aspects of life, the intervention focused first on themes related to the unknown and lack of control before moving on to identifying goal- and values-based approaches to pursuing a meaningful life. Although our intervention merged concepts from multiple psychotherapies, it was perhaps most closely tied to acceptance and commitment therapy (ACT).¹⁸ ACT takes the important perspective that we are often driven to try to fix problems in our lives, but that the efforts to fix these problems—especially those that are unfixable or where the cost of trying to fix them outweighs the benefits—can lead to unintended challenges. Perhaps most notably, the pursuit of such solutions leads us towards a life consumed by the problem or challenge, giving life to that problem or challenge, and resulting in spending too little time on the things that add value to our lives. In ACT, patients learn strategies to improve their ability to coexist with these challenges, rather than fight them, and redirect their time, energy, and efforts towards the dimensions of life that add value. In our intervention we lean heavily on ACT-based skills to enhance individuals’ abilities to coexist with the uncertainties and uncontrollable aspects of MS. In a pilot study of our intervention,14 participants reported positive effects on their IU and acceptance of their MS relative to treatment as usual. They also indicated the intervention was acceptable, with high ratings of perceived benefits and satisfaction.

Notably, a difference of our novel intervention from more traditional interventions is that it takes a transdiagnostic perspective¹⁹ that seeks to address an underlying factor (ie, intolerance of uncertainty) common to multiple undesired outcomes (eg, depression, anxiety, or low quality of life). Specifically, our intervention directly targets IU to indirectly affect mood, anxiety, and quality of life in persons with MS. In contrast, traditional psychotherapies, such as cognitive-behavioral therapy, directly address the distress outcomes (eg, depression, anxiety, or low quality of life), with interventions indirectly affecting underlying constructs, such as intolerance of uncertainty. Recognizing that both approaches have merit, we are conducting an ongoing randomized controlled trial funded by the National Multiple Sclerosis Society to determine if either is superior to the other and, perhaps more importantly, for whom, so that we can better assist patients with MS in navigating this challenging aspect of the disease.

Navigating Uncertainty in Clinical Practice

Despite our interest in developing psychologist-led interventions for IU in the MS population, we believe the vast majority of managing MS-related uncertainty occurs within the traditional medical setting. With that in mind, it is critical that all providers—not just psychologists—take ownership of their role in helping patients manage MS-related uncertainty.

Understanding Your Patient’s IU

Throughout this article we have made what we hope is a compelling case for considering how patients cope with uncertainty as part of a standard case conceptualization. As an example, consider the patient who is contemplating a change in disease-modifying therapies. You will undoubtedly tell them about the risks and benefits of the various options. Although the emphasis is often on a risk to benefit ratio, both empirically and owing to personal preferences, the decision is also full of uncertainty. Each risk and benefit discussed may or may not occur, and how a particular individual feels about those risks and benefits is influenced by their personal perspective. How an individual manages uncertainty will influence how they make a decision and may even affect what decision they make.

Medical professionals may wish to consider a patient’s general tendencies towards coping with uncertainty (ie, do they seem well-equipped to coexist with uncertainty or do they trend towards avoidance or worry?) and the associated benefits or detriments of that style, and it is equally important to consider that individuals can display within-self differences dependent on domains. Anecdotally, we have observed individuals who prefer an avoidant style until they cannot avoid the information, at which point they transition to a worry-based approach, essentially trading 1 manifestation of difficulty coexisting with uncertainty for another. As another example, this could be a person who avoids learning key information about their MS but then worries extensively upon learning the results of a recent MRI. Understanding that a person may be avoidant, perhaps because they are trying to keep themselves from worrying, can help you shape how you share MS-related information with them.

Keep in mind, the goal is not to determine whether a person is coping with uncertainty in the right or wrong ways. Rather, the goal is to consider these factors just as you would consider other factors across the biopsychosocial spectrum, giving you a better understanding of the person in front of you and what may influence their care.

Evaluating and Coping With Your Own IU

Clinicians of all types and specialties are human and, therefore, not immune from the challenges of coping with uncertainty. A small but interesting body of literature has examined how physicians cope with uncertainty and how this affects not only their clinical decisions but also personal factors, such as their own level of distress.^20-22 The bottom line is that the presence of uncertainty affects healthcare professionals too, and higher IU relates to less desirable outcomes.

Earlier, we described IU as a cognitive bias, which means that how a person copes with uncertainty biases their thinking, as with any other biases they carry with them on a daily basis. With that in mind, we encourage providers to consider their cognitive biases around uncertainty (Box 1).

Again, there are no right or wrong answers to these questions. Understanding who you are and how you respond will give you a better foundation for helping your patients in the most effective way.

Being an Asset to Patients in Managing MS-Related Uncertainty

Beyond understanding the patients’ and healthcare team members perspectives on uncertainty, it is important for all members of the healthcare team, including neurologists, to assist patients in optimizing their ability to coexist with uncertainty. Working from the concept of IU, the goal is to promote tolerance for the presence of uncertainty, which should not be confused with liking its presence. Rather, the goal is to help our patients recognize the presence of uncertainty in their lives and improve their ability to make the best decisions for their well-being and quality of life despite the presence of uncertainty.

Tolerating uncertainty can generally be broken down as wanting the patient to do what they can to control what is reasonable and productive to control, while also developing skills to coexist with the uncertainty that remains after they have controlled what is within their control.

Neurologists play a critical role in defining what is controllable in MS. Patients look to their physicians and healthcare team to understand where they should put their efforts to positively affect their well-being. Controllable factors are medically focused areas such as attending appointments, participating in rehabilitation therapies, or taking medications as scheduled. Nonmedical areas can also be controllable (eg, managing stress, seeking social support, or seeking disability accommodations) within the individual’s abilities and circumstances. Working with patients to improve their understanding of what is controllable is productive in increasing their engagement in self-management of their MS. Recognizing that there are aspects of MS management that are within their control also can reduce the perceived magnitude of the uncertainty surrounding their disease.

At the same time, physicians also play a critical role in helping patients understand what is not controllable and how to respond adaptively to the aspects of the disease that are out of their control. This is where promoting tolerance—again, helping to improve the ability to coexist with MS, but not requiring one to like its presence—and modeling how to coexist with uncertainty can be very powerful (Box 2).

Summary

Individuals living with MS face the challenge of constant uncertainty. Coping poorly with uncertainty can serve as a threat to function, well-being, and quality of life. At the same time, multifaceted approaches are available to facilitate an adaptive response that positively affects patients’ lives. Providers play an important role in gaining an understanding of responses to uncertainty and can play a similarly critical role in optimizing how individuals navigate this challenging aspect of MS.