Rebecca Cunningham, OTD, OTR/L, MSCS MS Summit September 28, 2019 Occupational Therapy Interventions for Management of Stress and Fatigue in MS Rebecca Cunningham, OTD, OTR/L, MSCS MS Summit September 28, 2019

Learning Objectives Describe behavior-based interventions to address stress and fatigue symptoms in MS Explain the impact of stress and fatigue symptoms on areas of occupational performance Understand the role of occupational therapists in addressing stress and fatigue symptoms

Occupational Therapy Role

Occupational Performance Impacts Functional impacts are going to vary based on severity of fatigue and stress symptom presentation in the individual In reality, any daily activity (or in OT speak – any meaningful occupation) can be impacted by these symptoms Number one cause of neurological disability in young adults ADLs, IADLs, rest/sleep, work and education, community engagement/social participation, leisure/play

Lifestyle Redesign® Process of acquiring health- promoting habits and routines in daily life Goals: Improve functional participation in occupations Improve self-management of symptoms from chronic conditions (Clark et al., 1997; Clark, et al., 2011; Jackson, et al., 1998; Mandel et al., 1999, Uyeshiro Simon & Collins, 2017)

Fatigue in MS

Fatigue Presentation in MS Fatigue is a subjective lack of physical, cognitive, and/or emotional energy that is perceived by the individual to interfere with usual and desired activities 50% identify fatigue as their most challenging symptom to manage Experienced by 75% to 90% of the MS population Those who experience fatigue describe it as negatively impacting employment, quality of life, socialization, and typical daily activity engagement Most individuals view fatigue as only physical in nature – need to expand our patients’ definition of fatigue to encompass cognitive and emotional fatigue Especially as most individuals describe feeling more fatigued or “exhausted” in response to emotionally demanding activities (Forwell, 2013)

Fatigue Types Primary fatigue (lassitude) Experience is directly related to the MS disease process Typically increases with heat and as the day progresses Secondary fatigue Experience is related to other influencing factors, including: Depression Sleep problems Medication side effects Deconditioning Chronic stressors Comorbid conditions Mobility limitations Cognitive deficits ADDRESS BOTH Rehab/remediate secondary fatigue factors – correct sleep disruption, exercise for deconditioning, etc. Compensate/accommodate primary fatigue – activity pacing, energy conservation, energy optimization, cooling strategies, etc. (Forwell, 2013)

Behavioral Interventions

Fatigue Management Interventions Activity Pacing Energy Conservation Exercise Body Temperature Control Energy Optimization Health Habits & Routines Address Secondary Factors Health Habits and Routines includes: eating small/frequent meals, prioritizing time for exercise, engaging in self-monitoring behaviors in order to modify activity participation or take breaks/intervene earlier Body Temperature Control: cooling strategies – A/C, vests, cooling towels, etc. Address Secondary Factors: sleep modifications, medication side effects, comorbid conditions, mobility limitations, etc. (Asano, et al., 2015; Blikman, et al., 2013; Finlayson, et al., 2011; Khan, Amatya & Galea, 2014; Kos, et al., 2016; Thomas, et al., 2014)

Activity Pacing and Energy Conservation Frequent breaks Activity shifting Activity simplification Slower pace Limit recognition and compliance Energy Conservation Activity modification Seated positioning during activities Restorative activity participation Delegation Modify environment Energy Optimization Schedule based on energy trends or patterns Assessment of activity energy demands Consider emotional, physical, cognitive demands Spoon theory Patients tend to be more amenable to making changes related to secondary fatigue factors, and have a harder time with primary fatigue management strategy implementation Energy Conservation Physical, mental, emotional Save energy in some areas in order to spend energy in more important areas Activity Pacing Alternate between activity and rest Increase overall activity strategically Avoid “crash and burn” Be able to do more over a longer period of time (Asano, et al., 2015; Blikman, et al., 2013; Finlayson, et al., 2011; Forwell, 2013; Khan, Amatya & Galea, 2014; Kos, et al., 2016; Thomas, et al., 2014)

Perspective Shifting Thoughts Feelings Behaviors If we do not challenge and attempt to shift the patient’s thoughts/perspectives about activity pacing and fatigue management, the follow through with strategy utilization will not occur Many individuals with chronic fatigue view themselves as lazy if they don’t do as much as those without chronic fatigue Feel the need to be as productive as others d/t societal expectations, familial expectations, personal expectations Athlete mindset

Time Efficiency vs. Energy Efficiency Time is constant factor Energy is the limited resource Energy efficiency as primary and time efficiency as secondary This perspective helps to clarify energy optimization strategies Our society is built around the idea of time efficiency – how can we be the most productive in the shortest amount of time, in order to maximize our output/productivity? This is a hugely problematic mindset for an individual living with chronic fatigue as it leaves them susceptible to overexertion and sx exacerbation (e.g. paying for it) Example: if we have 4 errands to run we’ll map out a route to complete them all in the shortest duration possible – can and likely will lead to overexertion in individuals with chronic fatigue Need to shift mindset to that of energy efficiency, as those who have chronic fatigue, energy is the limited resource NOT time The amount of time available each day is essentially the same

Reframing “Lazy” Lazy is being unwilling to work or use energy In the realm of chronic fatigue “lazy” is a four letter word Reality = Insufficient energy to work or engage in activities Danger of “lazy” becoming internalized

Athlete Mindset – “Pushing” Tendency and mindset to “push” through fatigue and pain Leaves individuals susceptible to overexertion and symptom exacerbation Need to learn to “push” within reason If meaningful to “push,” plan accordingly Planning for buffer time following meaningful activities that require “pushing” increases sense of control Reduces risk and increases understanding of overexertion cycle Need to start making connections re: behavioral choices and how they impact sx presentation

Stress in MS

Stress Presentation in MS Depression Progression of MS Primary effects: Symptom exacerbation More lesions Secondary effects: Less time for healthy routines Poor sleep Changes in mood Negative impact on cognitive function Increased fatigue Disruption of occupation/activity routines Avoidance and/or procrastination Addresses cognitive deficits, sleep, depression, and stress (Lovera & Reza, 2013; Mohr, et al., 2012)

Stress Types Acute Stress Typically very brief Most common and frequent presentation Episodic Acute Stress When take on too many tasks Overwhelmed by demands “Type A” and “Worrier” personalities Chronic Stress Long-term activation Most harmful stress Some individuals habituate to it Acute vs. episodic acute vs. chronic Acute stress can be positive or negative – thrill of skiing down a slope, car accident, deadline at work or school, etc. Episodic acute stress – perpetual crisis mode; take on too much without sufficient organizational skills to manage the high level task demand Chronic stress – occurs when a person is unable to see a way out of a particular situation, unrelenting demands/pressures for interminable periods of time – person gives up searching for solutions (APA, 2019)

Behavioral Interventions

Stress Interventions Relaxation Techniques Deep breathing Meditation Body scan Progressive muscle relaxation (PMR) Visualization and imagery Cognitive Based Interventions Positive psychology exercises Gratitude 3 Good things Cognitive reframing strategies Communication of needs Health-Promoting Coping Physical activity Time spent outdoors/in nature Creative pursuits Reading Organizational and time mgmt. tools (Bowling, 2013; Foley & Sarnoff, 2015; Kos, et al., 2016; Mongrain & Anselmo-Matthews, 2012; Seligman, 2011)

Perspective Shifting Thoughts Feelings Behaviors If we do not challenge and attempt to shift the patient’s thoughts/perspectives about stress management, the follow through with strategy utilization will not occur

Stress Avoidance vs. Stress Management Avoidance behaviors can be unhealthy Need to learn self-management and coping skills for unavoidable situations Positive vs. negative stress Functional use of stress Completely eliminating or ridding oneself of stress is NOT realistic Can’t avoid all stress triggering situations, especially as our thoughts alone can trigger a stress response Viewing it as a challenge as opposed to a threat Not all stress is negative, we can functionally use it to improve performance, confidence, and self-efficacy in being able to navigate challenging situations Examples: public speaking, taking a test, large deadline at work, making F/U healthcare appointments with providers, attending a support group, communicating our needs, etc.

Early Intervention Stress symptom/sign checklist Identify all signs and then specify earliest recognizable Intervene during early symptoms for greater self- management success

Communication of Needs Important to use the accurate terms for symptom experience Stress triggered by responses of friends and family to description of symptoms or lived experience Identify individuals whose perspective/opinion is valued Example: Fatigued vs. Tired Friends, family, healthcare providers, employers, teachers, etc. can’t read our minds and often don’t have similar lived experience to where they understand what chronic fatigue feels like We can’t expect them to understand it Identify those individuals whose opinion matters to the patient and help them craft methods for communicating needs accurately so as not to diminish the experience; not every person will matter and/or we don’t have the emotional energy to engage in this description with every single person, so we need to help patients prioritize whom to communicate with If we use the word tired, the person will reflect on their own experiences and make a comparison to try to connect with the patient This can devalue the person’s lived experience with chronic fatigue – may feel resentful, frustrated, dissatisfied, or hurt We need to use the correct terminology to reduce risk or likelihood of this scenario occurring

Summary Points Beneficial to provide these “nugget” like pieces of education/mini- interventions to patients Perspective and mindset matters in terms of follow through with recommendations For those who have difficulty with follow through and need more support for compliance, refer to occupational therapy

Questions

References American Psychological Association (2019). Stress: The different kinds of stress. Retrieved from: https://www.apa.org/helpcenter/stress-kinds Asano, M., Berg, E., Johnson, K., Turpin, M. & Finlayson, M.L. (2015). A scoping review of rehabilitation interventions that reduce fatigue among adults with multiple sclerosis. Disability and Rehabilitation, 37(9), 279-238. Blikman, L.J., Huisstede, B.M., Kooijmans, H., Stam, H.J., Bussman, J.B. & van Meeteren, J. (2013). Effectiveness of energy conservation treatment in reducing fatigue in multiple sclerosis: A systematic review and meta-analysis. Archives of Physical Medicine and Rehabilitation, 94: 1360-1376. Bowling, A.C. (2013). Complementary and alternative medicine: Practical considerations. In A.D. Rae-Grant, R.J. Fox & F. Bethoux (Eds.), Multiple sclerosis and related disorders: Clinical guide to diagnosis, medical management, and rehabilitation (243-249). New York, NY: Demos Medical Publishing, LLC. Clark, F., Azen, S.P., Zemke, R., Jackson, J., Carlson, M., Mandel, D., et al. (1997). Occupational therapy for independent-living older adults: A randomized controlled trial. Journal of the American Medical Association, 278, 1321-1326. Clark, F., Jackson, J., Carlson, M., Chou, C., Cherry, B., Jordan-Marssh, M., Azen, S. (2011). Effectiveness of a lifestyle intervention in promoting the well-being of independently living older people: results of the Well Elderly 2 Randomized Controlled Trial. Journal of Epidemiology in Community Health: doi:10.1136/jech.2009.099754 Finlayson, M., Preissner, K., Cho, C. & Plow, M. (2011). Randomized trial of a teleconference-delivered fatigue management program for people with multiple sclerosis. Multiple Sclerosis Journal, 17(9), 1130-1140. Finlayson, M., Preissner, K. Cho, C. (2012). Outcome moderators of a fatigue management program for people with multiple sclerosis. American Journal of Occupational Therapy, 66: 187-197. Foley, F. & Sarnoff, J. (2015). Taming stress in multiple sclerosis. Retrieved from: http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Taming-Stress.pdf

References Forwell, S. (2013). Fatigue in multiple sclerosis. In A.D. Rae-Grant, R.J. Fox & F. Bethoux (Eds.), Multiple sclerosis and related disorders: Clinical guide to diagnosis, medical management, and rehabilitation (145-154). New York, NY: Demos Medical Publishing, LLC. Jackson, J., Carlson, M., Mandel, D., Zemke, R., & Clark, F. (1998). Occupation in lifestyle redesign®: The Well Elderly Study occupational therapy program. American Journal of Occupational Therapy, 52, 326-336. Khan, F., Amatya, B., & Galea, M. (2014). Management of fatigue in persons with multiple sclerosis. Frontiers in Neurology, 15. https://doi.org/10.3389/fneur.2014.00177 Kos, D., Duportail, M., Meirte, J., Meeus, M., D’hooghe, M.B., Nagels, G…Nijs, J. (2016). The effectiveness of a self-management occupational therapy intervention on activity performance in individuals with multiple sclerosis-related fatigue: A randomized-controlled trial. International Journal of Rehabilitation Research, 39(3): 255-262. Lovera, J. & Reza, T. (2013). Stress in multiple sclerosis: Review of new developments and future directions. Curr Neurol Neurosci Repos, 13: 398-403. Mohr, D.C., Lovera, J., Brown, T., Cohen, B., Neylan, T., Henry, R…Pelletier, D. (2012). A randomized trial of stress management for the prevention of new brain lesions in MS. Neurology, 79: 412-419. Mongrain, M. & Anselmo-Matthews, T. (2012). Do Positive Psychology Exercises Work? A Replication of Seligman et al. Journal of Clinical Psychology, 68(4), p. 382-389. Rensel M.R. (2013). General health and wellness in multiple sclerosis. In A.D. Rae-Grant, R.J. Fox & F. Bethoux (Eds.), Multiple sclerosis and related disorders: Clinical guide to diagnosis, medical management, and rehabilitation (235-242). New York, NY: Demos Medical Publishing, LLC. Seligman, M. (2011). Flourish: A visionary new understanding of happiness and well-being. New York: Free Press Print. Thomas, P.W., Thomas, S., Kersten, P., Jones, R., Slingsby, V., Nock, A…Hillier, C. (2014). One year follow-up of a pragmatic multi-centre randomized controlled trial of a group-based fatigue management programme (FACETS) for people with multiple sclerosis. BioMed Central Neurology, 14: 109. Uyeshiro Simon, A. & Collins, C.E.R. (2017). Lifestyle redesign(R) for chronic pain management: A retrospective clinical efficacy study. American Journal of Occupational Therapy, 71, 7104190040. https://doi.org/10.5014/ajot.2017.025502

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