261549 Symptom Burden in Persons with Muscular Dystrophy (MD)

Tuesday, October 30, 2012

Amanda E. Smith, BS , Rehabilitation Medicine, University of Washington, Seattle, WA
Kara McMullen, MPH , Department of Rehabilitation Medicine, University of Washington, Seattle, WA
Ivan Molton, PhD , Rehabilitation Medicine, University of Washington, Seattle, WA
Aimee Verrall, MPH , Department of Rehabilitation Medicine, University of Washington, Seattle, WA
Introduction: Research suggests that pain, fatigue, imbalance, memory loss and vision loss may be a significant problem in persons with muscular dystrophy. The current study examines these symptoms, and their impact on patient functioning.

Methods: 170 peoplewith Myotonic Dystrophy Type 1 or Facioscapulohumeral Dystrophy participated in a study examining MD. Measures assessed incidence,, severity and course of five symptoms using a 0 to 10 Numerical Rating Scale. Social integration and psychological functioning were assessed using the Community Integration Questionnaire (CIQ) and the SF-36 mental component score. Descriptive and regression analyses examined the association between symptoms and functioning.

Results: The most common symptoms reported were fatigue (90.6%), imbalance (82.4%) and pain (76.5%). The most severe symptom was imbalance (50.0% reported levels >6 on the NRS), followed by fatigue (46.5% >6). All symptoms were more likely to stay the same or get worse than improve since onset.When controlling for potential confounds, these symptoms explained 17% of the variance of the mental component score, 10% of home competency, 10% of social integration, and 9% of productive activity.

Discussion: Pain, fatigue and imbalance are commonly reported symptoms in persons with MD. The severity and trajectory of these symptoms highlight a need for interventions to mitigate their impact on people with MD, and to improve productive activity and social integration. Further research is needed to examine the relationships among these symptoms and functioning and to guide clinical practices.

Learning Areas:
Chronic disease management and prevention
Social and behavioral sciences

Learning Objectives:
1. Evaluate the presence of pain, fatigue, imbalance, memory loss and vision loss in people with MD. 2. Assess the association between pain, fatigue, imbalance, memory loss and vision loss and mental and social functioning in people with MD.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Iím a Research Assistant for the Rehabilitation Research & Training Center for Aging with a Physical Disability and lead several projects looking at symptom severity and its effects on patient functioning in people aging with MD, MS, PPS, and SCI. I have also worked on several projects at the UC Davis Rehabilitation Research and Training Center for Neuromuscular disease, focusing on quality of life in persons with muscular dystrophy.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.