Lifestyle Redesign® for Multiple Sclerosis: Group and One-to-One Intervention Opportunities
Rebecca Cunningham, OTD, OTR/L
Multiple Sclerosis (MS) is the most widespread disabling neurological condition of young adults around the world, with diagnosis most commonly occurring between 20 and 40 years of age (Halper & Harris, 2012). New research indicates there are just under one million people living with this disease in the United States (National Multiple Sclerosis Society [NMSS], n.d.), with 200 new cases diagnosed each week. MS is a demyelinating disease of the Central Nervous System (CNS) that affects the brain, optic nerves, and spinal cord. It is considered to be an autoimmune or immune-mediated condition in which the body mistakes its own cells as foreign invaders and attacks them. This leads to the damage of oligodendrocytes, which are responsible for the myelination of neurons in the CNS. As a result, neuronal connections throughout the CNS are slowed or irreparably damaged, causing a wide variety of symptoms based on the location and severity of lesions. The most common symptoms include fatigue; depression; muscle weakness; vision changes; bowel, bladder, and sexual dysfunction; gait disruption; paresthesia; and neuropathic pain (Halper & Harris, 2012). These symptoms have the potential to affect multiple areas of occupational performance, including activities of daily living (ADLs), instrumental activities of daily living (IADLs), work, and community integration. As such, occupational therapists (OTs) have the expertise to help people with MS improve their functioning across areas of occupational performance, as well as assist them in making lifestyle changes to promote more effective and independent self-management of the disease.
Evidence in the MS literature supports behavior and lifestyle interventions as an important component for symptom and disease management. This includes:
- Stress management and self-regulation routines (Artemiadis, et al, 2012; Burns, Nawacki, Kwasny, Pelletier & Mohr, 2014; Mohr, et al, 2012)
- Bowel, bladder, and sexual dysfunction management (Blackmore, Hart, Albiani & Mohr, 2011; Coggrave, Norton & Cody, 2014; Moore, 2007; Orasanu & Mahajan, 2013)
- Nutrition and eating routines (Rensel, 2013; Riccio & Rossano, 2015)
- Fatigue management (Asano, Berg, Johnson, Turpin & Finlayson, 2015; Forwell, 2013)
- Physical activity routines (Bethoux, 2013; Kargarfard, Etemadifar, Baker, Mehrabi & Hayatbakhsh, 2012)
- Sleep habits and routines (Clancy, Drerup & Sullivan, 2015; Strober, 2015).
An occupational therapy (OT) approach to treatment that focuses on behavior and lifestyle changes is Lifestyle Redesign®. OTs who utilize Lifestyle Redesign® help patients acquire health-promoting habits and routines (Clark, et al, 1997) to improve overall function, health, and quality of life. This methodology involves didactic presentation, peer exchange, direct experience, and personal exploration interventions, in order to facilitate reflection, and increase motivation for and the enactment of health-promoting behavior changes (Mandel, Jackson, Zemke, Nelson & Clark, 1999). A module format consisting of the aforementioned components is utilized to promote focused intervention implementation regarding different aspects of health management that serves to improve chronic condition self-management skills. Lifestyle Redesign® interventions can be delivered in group and one-to-one formats, with increased individualization of modules when working one-to-one.
Due to the efficacy of Lifestyle Redesign® methodology (Clark, et al, 2011; Clark et al, 1997; Jackson et al, 1998;) and the evidence in the MS literature regarding benefits of behavior and lifestyle change for disease self-management, the University of Southern California (USC) and the USC Occupational Therapy Faculty Practice (OTFP) provide both one-to-one and group based service opportunities for individuals living with an MS diagnosis.
One-to-one Lifestyle Redesign® services are provided at the USC OTFP. Collaboratively developed plans of care vary in duration, but typically last between eight and twelve visits. The Canadian Occupational Performance Measure (COPM), RAND Short Form 36 Health-Related Quality of Life questionnaire, and Multiple Sclerosis Quality of Life Inventory (MSQLI) are measures used to support the evaluation process, and are completed again at discharge. Modules that are utilized during follow-up visits to facilitate implementation of the Lifestyle Redesign® process cover a variety of performance areas, including:
- Bowel, bladder, and sexual symptom management
- Stress management
- Fatigue management
- Cognitive symptom management
- Healthy eating routines
- Physical activity routines
- Sleep habits and routines
- Time management
- Assertive communication and self-advocacy
All modules are structured to provide education, promote self-analysis and problem-solving, support strategy identification and prioritization of health-promoting changes in habits and routines, and facilitate short-term goal setting. While data has yet to be analyzed and published on the one-to-one service provision, early trends show improvements across overall COPM scores, a selection of MSQLI subscales, and specific RAND SF-36 subscores.
Group based Lifestyle Redesign® services for the MS population are delivered through the Optimal Living with MS program, which is a 11-week course that involves USC OT students delivering group and individual interventions for participants living with MS under the supervision of an OT faculty member. The course consists of 1.5 hours per week of OT, a one-hour educational speaker, and one hour of physical therapy. The OT group contains the four components of Lifestyle Redesign®, beginning with didactic education and peer-to-peer sharing, followed by an occupation-based activity, and concluding with one-to-one problem solving and goal setting between the participant and their assigned student. Modules implemented during the group format include fatigue management, stress management, assertiveness and self-advocacy, eating routines, adaptive equipment, and home safety.
Outcome measures administered pre- and post-program include the COPM and Modified Fatigue Impact Scale (MFIS). Significant improvements in functioning and quality of life are seen in both the COPM and MFIS scores. COPM Performance score mean increased by 1.75 points and COPM Satisfaction score increased by 2.68 points. Higher COPM scores indicate improved perceived performance or satisfaction in activities of functional difficulty that were identified as most important upon evaluation. MFIS Physical Subscale mean decreased by 4.23 points, Cognitive Subscale mean decreased by 3.95 points, and Psychosocial Subscale mean decreased by 0.90 points. Total MFIS Score revealed a mean decrease of 9.60 points. Lower MFIS scores indicate less impact of fatigue on the different domains.
While data has yet to be published on the one-to-one Lifestyle Redesign® service provision, the Optimal Living with MS group data adds to a growing body of evidence that suggests lifestyle-based OT interventions can make a significant difference in function, health, and quality of life for people living with MS. Participants demonstrated improvements in perceived participation and satisfaction in self-identified areas of functional and lifestyle difficulty. In addition, the results demonstrate that participants felt reduced impact of fatigue in physical, cognitive, and psychosocial areas of functioning. Outcomes from the one-to-one service line continues to be collected, with upcoming planned analysis and publication of results, in order to support OT’s role in providing services to the MS population.
About the Author:
Rebecca Cunningham, OTD, OTR/L received her Master’s and Clinical Doctorate of Occupational Therapy degrees from the University of Southern California. Her clinical residency was completed at the USC Occupational Therapy Faculty Practice, where she provided Lifestyle Redesign® services and focused on further development of the Lifestyle Redesign® program for individuals living with Multiple Sclerosis. As a clinical faculty member at the USC Occupational Therapy Faculty Practice, Dr. Cunningham works with clients in the multiple sclerosis, chronic pain and headaches and mental health programs, and is a member of the USC Multiple Sclerosis multidisciplinary team.
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