The Disease Can Follows One of Four Patterns

Background:

Multiple sclerosis (MS) is a neurological autoimmune disease characterized by demyelination occurring in the central nervous system.

The disease can follows one of four patterns:  relapse-remitting  secondary progressive  primary progressive  progressive relapsing

Participation, a key component of health is defined as “involvement in a life situation” by the International Classification of Functioning, Disability and Health (ICF).

Participation restrictions are often a byproduct of coping with a chronic illness such as Multiple Sclerosis (MS) (Yorkston et al., 2003).

Personal factors in the ICF model include lifestyle or health habits. These are posited to impact the functioning/participation and health-related quality of life of persons with chronic illnesses like MS. (Stuifbergen, et al 2006).

Further information is needed to clarify to clarify these relationships.

Research Questions: 1. What are the health promoting behavior patterns of women diagnosed with multiple sclerosis? 2. Is there a relationship between health promoting behaviors and health-related quality of life? 3. Is there a relationship between health promoting behaviors and role participation?

Sample: Women with MS were solicited through the local National MS Society Newsletter and two internet-based programs (n=48). Instrumentation: Health-promoting behaviors HPLP-II (Health-promoting Lifestyle Profile II) scored as either: (never = 1, sometimes = 2, often = 3, routinely = 4)  physical activity  spirituality growth  interpersonal relationships  stress management  nutrition  spiritual growth  health responsibility

Health-Related Quality of Life (HR-QOL) SF-36  Physical Component Summary (PCS)  Mental Component Summary (MCS)

Participation (work or regular daily activities)  Role physical scale (SF-36). Effect of physical health limitations on: Time, Productivity, Kind or Difficulty with activity.  Role emotional scale (SF-36). Effect of emotional health limitations on: Time, Productivity or Carefulness with activity  Role emotional (SF-36). Social function

Results:

The Relationship Between Health Promoting Behaviors, Health-Related Quality of Life and Role Participation (N=48)

HPLP-II PCS36 MCS36 Role Role Social Physical Emotional Functioning Health .033 .007 .003 .005 .012 Responsibility Physical .395** .224 .387** .283 .225 Activity Nutrition .199 .121 .290* .111 .064 Spiritual .217 .563** .427** .433** .431** Growth Interpersonal .160 .401** .211 .456** .379** Relations Stress .082 .365* .119 .235 .208 Management Overall Score .272 .417** .362* .376** .328*

** p < .01 * p < .05

Conclusions:  Women who engaged more frequently in physical exercise, practiced good nutrition and spiritual growth, had a higher degree of physical role performance.

 Women who more frequently reported positive interpersonal relations and greater spiritual growth reported a higher degree of social functioning and emotional role performance.

 Women who participated in spiritual growth activities, positive interpersonal relationships and stress management had a higher perception of mental health- related quality of life.

Applications for Rehabilitation Practitioners Rehabilitation practitioners may facilitate participation in life roles for women with MS, by providing information in the five areas correlated with improved HR-QOL and participation:

Physical Activity:  Although beneficial it must be carefully monitored to avoid adverse effects such as exacerbations of symptoms (e.g. heat intolerance, fatigue) in persons with MS.  It should be individualized, incremental & dynamic to accommodate for ever changing degrees of ability/disability.  Adaptations could include: ◦ Appropriate pool temperature (80 – 84 degrees) ◦ Early AM or dusk workouts to avoid the heat ◦ Exercise in an air conditioned environment ◦ Circuit training ◦ Use a cooling vest or cooling cloth while working out ◦ MS exercise groups or adaptive sports ◦ ADL's or ROM as activity for those with greater physical disability

Nutrition: What are your client's barriers to good nutrition?  Related to cooking tasks ◦ Energy conservation ◦ Activity/environmental adaptations  Related to shopping ◦ Online ordering ◦ Delivery  Related to financial burden ◦ NMSS as a support system

Stress Management:  Modification of traditional methods ◦ Yoga for MS ◦ Tai chi for MS ◦ Meditation ◦ Music/aromatherapy  Novel methods ◦ Quote boards ◦ Reframing ◦ Author's with MS (see weblinks)

Interpersonal Relations: There are unique challenges individuals with MS face in their interpersonal relations, such as:  Invisible impairment  Unpredictability inherent in a relapsing-remitting condition  Illness disclosure  Self advocacy & accommodations (504/ADA)  Asking for and accepting help comfortably, as well as graciously refusing unsolicited assistance

Spiritual Growth:  Given the significant correlations between spirituality and mental health- related quality of life, as well as all three measures of participation - the usefulness of cultivating a sense of spirituality in occupational therapy intervention warrants further scholarship.

 Suggestions for intervention include: ◦ Gratitude journals ◦ Intention boards ◦ I highly recommend Sharon Gutman's book available from AOTA Press (see weblinks) ◦ Author's with MS

Limitations and Future Research:  Further research is suggested with a larger sample and control for the type of MS.  Current study uses a correlational design describing relationships, not causality.  Further research using prediction to examine the causality is suggested.

References Stuifbergen, A. K., Blozis, S. A., Harrison, T. C., & Becker, H. A. (2006). Exercise, functional limitations, and quality of life: A longitudinal study of people with multiple sclerosis. Archives of Physical Medicine and Rehabilitation, 87, 935–943. doi:10.1016/j.apmr.2006.04.003

Tyszka, A. C., & Farber, R. S. (2010). Exploring the relation of health-promoting behaviors to role participation and health- related quality of life in women with multiple sclerosis: A pilot study. American Journal of Occupational Therapy, 64, 650–659. doi: 10.5014/ajot.2010.07121

Yorkston, K. M., Johnson, K., Klasner, E. R., Amtmann, D., Kuehn, C. M., & Dudgeon, B. (2003). Getting the work done: A qualitative study of individuals with multiple sclerosis. Disability and Rehabilitation, 25, 369–379. doi: 10.1080/0963828031000090506

“Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.” ~Bernie S. Siegel Weblinks

AJOT article http://ajot.aotapress.net/content/64/4/650.full.pdf+html?sid=85426241-348a-4817- a9eb-fce3e2cfbe68

Dr. Sharon Gutman - Living with Illness or Disability http://www.aota.org/Pubs/ProductCat10/2011-Catalog.aspx

Dr. Laina Turner-Molaski – The MS Project Volume 1 ORANGE is the new pink http://www.lainaturner.com/about/multiple-sclerosis/f-ms-the-book/

Shelly Peterman Schwarz – Multiple Sclerosis 300 tips for Making Life Easier http://www.demoshealth.com/prod.aspx?prod_id=9781932603217

Jackie Waldman - People with MS with the Courage to Give http://www.couragetogive.com/index.html

Chris Tatevosian – Life Interrupted No Longer www.lifeinterrupted-nolonger.com/

Dean Kramer - Life on Cripple Creek www.mscare.org/cmsc/News/Book-Reviews-Life-on-Cripple-Creek.html

Terry Garr – Speed Bumps Flooring it Through Hollywood http://www.nationalmssociety.org/multimedia-library/books/flooring-it-through- hollywood/index.aspx

David Lander – Fall Down Laughing http://davidllander.com/about_david/david_book.htm

David Osmond www.nationalmssociety.org/online-community/personal-stories/david-osmond/index.aspx www.davidosmond.com

MS World http://www.msworld.org/ Live Fully/Live Well http://www.nationalmssociety.org/living-with-multiple-sclerosis/live-fully-live- well/index.aspx

Contact Information

Andrea Carr Tyszka, MS, OTR 1905 W. High St. Haddon Heights, NJ 08035 [email protected]

Ruth S. Farber, PhD, OTR/L Associate Professor Department of Rehabilitation Sciences Program in Occupational Therapy College of Health Professions & Social Work Temple University 3307 North Broad Street Philadelphia, PA 19140 215-707-4880 [email protected]

SF-36 ordering information Quality Metric Incorporated SF-36.org 640 George Washington Highway Lincoln, RI 02865 USA

HPLP-II ordering information Susan Noble Walker Ed.D., R.N., F.A.A.N. College of Nursing University of Nebraska Medical Center 985330 Nebraska Medical Center Omaha, Nebraska 68198-5330