Behavioral Interventions in Multiple Sclerosis
Importance: Multiple sclerosis (MS) is a complex and unpredictable neurologic disease affecting nearly 1 million people in the US. People with MS commonly experience multiple physical and psychological symptoms such as depression, anxiety, stress, fatigue, and pain that impact functioning and quality of life. Subsequently, living with MS requires routine management of MS symptoms, adaptation to challenges, and engagement in health behaviors to promote well-being over time.
Observations: There is considerable evidence that behavioral interventions that increase cognitive and/or behavioral skills to address the challenges of day-to-day life with MS can promote resilience and reduce overall distress associated with this chronic and unpredictable disease. Brief group-based cognitive-behavioral therapy (CBT) and CBT-based interventions (eg, self-management) have been shown to reduce symptoms of depression, anxiety, stress, fatigue, and pain in people with MS, including via telehealth delivery. Likewise, mindfulness-based interventions have been shown to improve depression, anxiety, stress, fatigue, and quality of life in people with MS. Behavioral interventions also have been shown to improve health behaviors such as physical activity and adherence to disease modifying therapies in MS. Unlike other treatment options, behavioral interventions can be delivered in various formats (eg, in-person, telehealth), are time-limited, and cause few (if any) undesirable systemic side effects.
Conclusions: Behavioral intervention is an integral component of interprofessional care and key aspect of living well with MS.
Self-Management
As with any chronic illness, living well with MS requires ongoing commitment and active engagement with health and personal care over time. The process of building knowledge and skills to manage the day-to-day physical, emotional, and social aspects of living with illness often is referred to as self-management.35 For individuals with MS, this may take the form of participation in programs that address adaptation and psychological distress like those described above, but it also may include improving health behavior (eg, physical activity, DMT adherence, modification of maladaptive habits like smoking or hazardous alcohol use) and symptom management (eg, fatigue, pain). Self-management programs typically include education, the practice of identifying, problem solving, and following through with specific and realistic health and wellness goals, as well as the bolstering of self-efficacy.
Physical Activity
Once discouraged for patients with MS, physical activity is now considered a cornerstone of health and wellness. Physical activity and interventions that target various forms of exercise have been shown to improve strength and endurance, reduce functional decline, enhance QOL, and likely reduce mortality.35-39 A variety of brief behavioral interventions have been shown to improve physical activity in MS. Structured group-based exercise classes focusing on various activities such as aerobic training (eg, cycling) or resistance training (eg, lower extremity strengthening) have demonstrated improvements in various measures of fitness and mood states such as depression and QOL. Brief home-based telephone counseling interventions based in social cognitive theory (eg, goal setting, navigating obstacles) and motivational interviewing strategies (eg, open-ended questions, affirmation, reflective listening, summarizing) also have been shown to be effective not only at increasing physical activity and improving depression and fatigue.40,41
Adherence to Treatment
One primary focus of adherence to treatment is medication management. For individuals with MS, DMTs represent a primary means of reducing disease burden and delaying functional decline. Many DMTs require consistent self-administration over time. Some evidence suggests that poorer adherence is associated with a greater risk of relapse and more rapid disease progression.42,43 Brief telephone counseling, again based on social cognitive theory, and principles of motivational interviewing combined with home telehealth monitoring by a care coordinator has been shown to improve adherence to DMTs.44
Mindfulness
In recent years, mindfulness training has emerged as a popular and common behavioral intervention among individuals with MS. Programs like Mindfulness-Based Stress Reduction (MBSR) provide training in meditation techniques designed to promote mindfulness, which is defined as paying attention to present moment experience, including sensations, thoughts, and emotions, without judgment or attachment.45 Cultivating mindfulness helps people with MS cope with and adapt to symptoms and stressors.46 Mindfulness interventions typically are delivered in a group format. For example, MBSR consists of 8 in-person group sessions with daily meditation practice homework. Mindfulness interventions also have been delivered effectively with smartphone apps.47 Mindfulness programs have been shown to improve depression, anxiety, fatigue, stress, and QOL for patients with MS.48-50
Fatigue
More than 90% of individuals with MS report fatigue, and many identify it as their most disabling symptom.51 Often defined as “a subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual and desired activities,” fatigue has been shown to be associated with longer disease duration, greater physical disability, progressive subtype, and depressive symptoms, although the relative and possibly overlapping impact of these issues is only partially understood.52,53 Fatigue is associated with poorer overall mental health and negatively impacts work and social roles.54