Patricia Wren examines how to improve the quality of life of patients with Lou Gehrig's disease

CBR member and Associate Professor Patricia Wren, of the School of Health Sciences, specializes in studying quality of life issues. For example, her recent paper in the May 2011 issue of Muscle & Nerve (Volume 43, Pages 643-647) is titled Amyotrophic Lateral Sclerosis Patients’ Self-Reported Satisfaction with Assistive Technology.  The disease Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig’s disease, affects motor neurons (those nerves controlling voluntary muscle movement) in the spinal cord. Symptoms include muscle weakness and atrophy. Many devices are available to help these patients deal with muscle weakness and improve their quality of life, but which ones really help? That is the question Wren and her University of Michigan collaborators answer. Their paper begins:

“Amyotrophic lateral sclerosis (ALS) is a degenerative disorder of motor neurons that results in progressive muscle weakness. As a result of this weakness, ALS patients have physical impairments that affect their activities of daily living (ADL). Clinical management recommendations for ALS patients with physical impairments include medical provider assessment and prescription of assistive devices to improve their function, maintain independence, and decrease fatigue. Although there has been some assessment of patient satisfaction with wheelchairs, there is little information about the reported usefulness of, and satisfaction with, commonly prescribed assistive devices. Understanding the usefulness of current assistive devices from the patient’s point of view may aid in clinical practice and in the development of future assistive technology. The purpose of this study was to determine the reported usefulness of and satisfaction with current assistive devices among patients with ALS.”

It is an interesting goal, but how do you achieve it? You ask the patients.

“ALS patients followed in the University of Michigan multidisciplinary ALS clinic from March 2008 to July 2009 were identified (n = 96). A telephone survey was administered, and responses were recorded anonymously. Proxy responses were not used, but information was sometimes conveyed to and from the patient by a caregiver. The survey instrument addressed four general topic areas: (1) demographics; (2) caregivers and dwelling; (3) functional impairments; and (4) assistive devices. Each of these four sections is described in what follows.”

And what did Wren and her colleagues find?

“This cross-sectional telephone survey of a cohort of ALS patients from a single multidisciplinary clinic has shown that bathroom adaptive devices were uniformly the most frequently used and received the highest reported usefulness and satisfaction scores. Additionally, of those assistive technologies used often or always by >20% of respondents, the ankle brace, transfer board, slip-on shoes, speaker phone, and electronic seating controls were highly ranked for both usefulness and satisfaction. Although motorized wheelchairs were used frequently by >25% of respondents, overall satisfaction with these devices was only moderate.”

Finally, what is the significance of this research? In other words, what effect might this study have on health care?

“Across the board, ALS subjects rated independent function with activities of daily living quite high. The current sample of patients rated independent function with communication and bathroom activities most highly. Therefore, medical providers should pay particular attention to optimizing assistive technology for both communication and bathroom activities.”

To learn more about Patricia Wren, see her recent profile in the Oakland Post.