Commentary
Article
Psychological Perspective on the Role of Mental Health in MS Rehabilitation and Care
Evan L. Smith, PhD, assistant professor of Physical Medicine & Rehabilitation at University of Michigan, discussed how emotional wellbeing, motivation, and evidence-based therapies can significantly influence outcomes in MS.
Evan L. Smith, PhD
(Credit: University of Michigan)
Mental health challenges are commonly reported among individuals with multiple sclerosis (MS), with prior studies suggesting a higher prevalence of depression and anxiety compared with the general population. These conditions may influence various aspects of disease management, including adherence to treatment and engagement in rehabilitation. Some recent research has also identified associations between psychological symptoms and factors such as disability level, fatigue, and socioeconomic status.1-3 Although the experience of mental health symptoms varies among patients with MS, addressing these concerns is an area of ongoing clinical interest.
Several psychotherapeutic approaches have been studied for their potential to support mental health, especially for patients living with MS. Cognitive Behavioral Therapy (CBT) has been assessed in clinical trials and has been reported to be associated with improvements in symptoms of depression and anxiety in this population.4 Other therapeutic models, including Acceptance and Commitment Therapy (ACT) and mindfulness-based interventions, have also been explored in MS, with some previous studies suggesting benefits related to psychological flexibility and symptom coping.5 Overall, these approaches are part of a broader effort to individualize care and enhance well-being in patients living with MS.
In a recent conversation with NeurologyLive®, rehabilitation psychologist Evan L. Smith, PhD, assistant professor in the Department of Physical Medicine & Rehabilitation at University of Michigan, further highlighted the profound impact of mental health challenges on patients with MS. He emphasized that motivation and engagement could be essential for effective care but are often disrupted by psychological symptoms. Smith outlined evidence-based interventions which have shown effectiveness in addressing depression, anxiety, fatigue, pain, and insomnia in MS. He also underscored the importance of health care providers being proactive in integrating mental health awareness, reducing stigma, and using a collaborative approach to empower patients.
NeurologyLive: How do mental health challenges in patients with MS impact their overall rehabilitation and disease management?
Evan L. Smith, PhD: MS is a chronic immune-mediated central nervous system condition that affects the brain, spinal cord and optic nerves, which presents with a wide array of symptoms that can affect a patient with MS rehabilitation and disease management. Coping with these symptoms and the variety of potential changes in visual, sensory, motor, cognitive, neuropsychiatric functioning can impact a patient’s engagement in their healthcare, including neurological rehabilitation and disease management. Although adjustment and grieving are expected, anxiety and depression are relatively common for newly diagnosed patients with MS as well as over the lifespan when disability accrual may occur, which can impact self-efficacy to manage one’s health and motivation for engagement in one’s healthcare.
A diagnosis of MS can come with a wide variety of emotions. Priorities, motivations and values might shift as life with MS is experienced in new and different ways. This can lead to feelings of loss of identity or purpose. Interaction between common symptoms like pain and fatigue with anxiety and depression are also known to amplify this experience. Healthcare engagement can also be influenced by a variety of co-occurring factors aside from mental health challenges, such as health literacy, resources, access and perceived trustworthiness of healthcare providers.
Motivation is an internal process whereas engagement is the degree to which we put our motivations into action. When a patient with MS is managing significant emotional distress, acutely or chronically, this can impact motivations to engage, which can ultimately be associated with unintended poorer healthcare outcomes.
For example, avoidance of stressful experiences is a common coping style that can functionally relieve acute anxiety and momentary distress. However, if a patient with MS is using a daily-dose injectable DMT, and this experience serves as an intolerable reminder of an unresolved conflict around living with MS, adherence may wane, potentially increasing risk of future relapses.
You can consider motivation as how ready one might feel to actually engage in their health care. Patients with MS are often confronted with choices throughout their day that require varying levels of motivation and can be difficult to navigate, especially when coping resources are low. Motivation often boils down to 2 main components, one’s degree of confidence that they can engage and how important it is to them to engage. By assessing these components, health care providers can support patients with MS to identify facilitators (i.e., knowledge) and barriers (i.e., insufficient self-efficacy) to engagement and work collaboratively to gradually enhance motivation by reducing barriers and strengthening facilitators to engagement.
What strategies have studies shown to be the most effective in addressing depression and anxiety in patients with MS in a rehabilitation setting?
Many patients with MS will find themselves at one point or another in a rehabilitation setting (i.e., engaging in rehabilitation therapies to address functional changes because of MS). The continuum of care can range from intensive care unit (ICU), inpatient hospitalization, inpatient rehabilitation, outpatient rehabilitation, in-home rehabilitation and independent maintenance of one’s own rehabilitation plan (i.e., home exercise program). At any point in care, a patient with MS may experience fluctuating symptoms of anxiety and/or depression that can impact rehabilitation engagement.
CBT is an evidence-based psychotherapy framework for addressing depression and anxiety in the general population, as well as in patients with MS. CBT involves a systematic series of coping skills to be developed over the course of psychotherapy care, often 8-12 sessions. Typical strategies that are most commonly used to treat anxiety and depression include psychoeducation, relaxation skills training (i.e., diaphragmatic breathing, progressive muscle relaxation, guided imagery), behavioral activation (i.e., gradual enhancement of engagement in activities that are enjoyable or meaningful), goal-setting and reframing of cognitive distortions (i.e., identifying the most accurate and helpful appraisal of the current situation). More targeted forms of CBT have also been designed and tested with evidence to suggest it is effective in helping patients with MS to manage common symptoms, including CBT for chronic pain (CBT-CP), fatigue (CBT-F), and insomnia (CBT-I).
As a brief example, a patient with MS who is participating in outpatient physical therapy may have developed anxiety related to fear of injury with movement. They may benefit from education about MS and the impact it is having on their balance, practice of self-management skills to calm the mind and body such as diaphragmatic breathing, reframing of potentially unhelpful catastrophic thoughts about functioning to more balanced appraisal and the development of a graded approach to attempting movements that were once feared, at their pace.
ACT is another evidence-based psychotherapy framework for several psychiatric diagnoses, including anxiety and depression, and has been widely validated in use with people living with MS. As it is with most behaviorally-based therapies, for ACT to be successful, it requires the person who is seeking change to be an active participant and to be recognized as the expert that they are on themselves and their own lived experience. Often, when faced with adversity we have a very well-intended instinct to change what is happening so that we hopefully feel better. Though, there are many situations that we did not vote for that to continue to happen which we are unable to fully change. This can leave one feeling helpless, hopeless and anxious. It can lead a patient with MS to avoid some aspects of their life that would be meaningful experiences if we were able to lean into and better understand these discomforts.
ACT aims to guide the person to focus their coping resources, not necessarily on changing their circumstance, their thoughts, feelings, or emotions, but in changing how they relate to their thoughts, feelings and emotions by embracing them with curiosity and without judgement. It incorporates mindfulness and acceptance-based processes to engage more fully with how we feel, and simultaneously committing to behaving in ways that support our values in the service of reducing suffering. For people living with MS, this type of approach is well-suited as it can often lead folks to more strategically use their resources, which can fluctuate day to day, and become more skilled in living each day in a value-directed manner that is adaptable to their ever changing circumstances.
How can health care providers better integrate mental health awareness into routine MS care to improve patient outcomes?
Living with MS is a patient experience with a multitude of potential symptoms that can be assessed for intervention and/or healthcare management. Depending on the extent and impact of these symptoms, patients and families with MS can interact with a wide variety of health care providers, including neurologists, primary care providers, physiatrists, physician assistants, urologists, gynecologists, physical, occupational and speech language pathologists, social workers, case managers and more. Many of these providers will be confronted at some point to understand the interaction of their own discipline and a patient coping with the impact of multiple sclerosis on their daily functioning.
I’ve worked with many interprofessional colleagues who interact with patients with MS and who understandably have varying degrees of comfort in discussing mental health care with patients. Patients with MS who are independently managing emotional distress may feel comfortable with this approach, though may also feel isolated or lonely in this experience. Health care providers are in a unique and privileged position to often be a trusted resource in the lives of patients with MS. They can provide a safe environment for patients with MS to express their concerns and learn more about the common experiences they may be having and potential interventions or services to support them through this journey. Even if you are not sure of an answer, for a patient with MS, having a provider who is honest and will work to get the answers in and of itself can reduce a patient’s stress.
As a provider, you could consider taking a 3-phased approach to these interactions: (1) the preparation prior to meeting with the patient, (2) interacting with the patient, and (3) follow-up after the interaction.
Prior to interacting with the patient:
- Consume evidence-based information regarding the prevalence and incidence rates of psychiatric conditions in patients living with MS.
- Consider using brief mental health screening assessments to provide data to support your conversations with your patient with MS.
- Learn about common cognitive and behavioral interventions to support patients with MS who are managing common symptoms such as anxiety, depression, pain, fatigue or insomnia.
- Consider training in motivational interviewing to support your approaches to partnered healthcare interactions.
During the interaction with the patient:
- Actively work to reduce mental healthcare stigma by normalizing the experiences of anxiety and/or depression as a common experience for patients with MS.
- Demonstrate trustworthiness by integrating a partnered approach to care, highlighting your expertise as well as the expertise of each individual on their own lived experience.
- Endorse positive regard for mental health services and provider referrals.
After the interaction with the patient:
- Provide high-quality information at an appropriate health literacy level about mental health care in MS.
- Provide information about potential psychological support programs or provider referrals.
- Advocate in your spheres of influence to hire and/or collaborate with mental health care providers who are trained in understanding brain-behavior relationships that affect people and families living with MS.
What are some misconceptions about the psychological impact of MS, and how can we improve education and support for both patients and clinicians?
Clinicians who read this piece may already be interested in and/or have a background in understanding the psychological impact of MS on patients and families. Although there are several important misconceptions that even the most well-intentioned providers may experience from time to time. We all experience some degree of bias, known and unknown to us, though recognizing these biases can help each provider to serve a more comprehensive patient community. We can expect this to be continuously imperfect and an opportunity for continuous learning for ourselves and with the patients we serve.
To start, suffering is not a prerequisite to living with MS. In fact, nearly half of all patients with MS may never meet criteria for a psychiatric diagnosis and even if they did, they may not necessarily be suffering. Despite changes in function or chronic symptom experiences, many patients with MS independently or through collaboration with their support systems (i.e., peers, family, friends, healthcare providers) develop strong skills for coping, resilience, adaptability and growth in the face of adversity.
A related misconception is the assumption that living with MS is an experience to be pitied neglects the strength and efforts that patients with MS put forth each day to manage the co-occurring symptom experiences. In the journey of living with MS, patients with MS can be exposed to re-evaluating their values, developing new connections with themselves, family, friends and MS community members and learn nuanced skills for effective coping that many people who do not live with MS might not experience.
Patients with MS who carry a pre-existing psychiatric diagnosis may be more vulnerable to health care provider bias and stigma. ‘It’s all in your head.’ ‘They are faking it.’ ‘They just don’t want to get better.’ These are potential inadvertent attributions a health care provider may conclude if a patient is reporting amplified symptom experiences in the absence of medical test data supporting the patient’s report or if the patient has not participated in an agreed upon treatment plan since the last appointment. These types of misconceptions can affect treatment recommendations and potentially avoidable negative healthcare outcomes. Providers may also feel compelled to try to ‘fix’ symptoms like anxiety or depression, when at times it is important to feel these experiences in order to learn and grow.
An approach I have found helpful in reducing these misconceptions is to genuinely recognize that any pattern of behavior that may currently be leading a patient with MS away from their desired health care outcomes likely began as a solution to problem. For example, a patient with MS who is experiencing chronic fatigue amplification with associated demoralization may be coping with fatigue in a manner that at one point was effective (i.e., pushing and overdoing to meet work deadlines) though in the context of chronic fatigue may no longer be as helpful (i.e., pushing through moderate fatigue to finish a project, resulting in a resource ‘crash’) and a more paced approach to activity engagement could support their goal attainment more effectively and reduce likelihood of fatigue amplification.
The National MS Society is one of several organizations dedicated to educational programming for patients, families and clinicians to serve and provide resources to the MS community.
Transcript edited for clarity.
