Quality Of Life In Als Patients Does Not Depend On Physical Strength
12 September 2000
Hershey, Pa--Researchers from Penn State's College of Medicine report that quality of life (QOL) assessments in patients with amyotrophic lateral sclerosis (ALS) reveal that QOL does not correlate with physical function, but rather appears to depend on psychological factors, spiritual factors and support systems.

"It was clear from the responses that patients' quality of life depended on things like the perception of purpose and the meaning of life," says Zachary Simmons, M.D., associate professor of medicine and orthopaedics and rehabilitation at Penn State's College of Medicine and director of the ALS Clinic at The Milton S. Hershey Medical Center. "This is a strong message to all of us that we should not assume that these patients have a poor QOL simply because they are physically debilitated."

Simmons and his colleagues' work titled, "Quality of Life in ALS Depends on Factors Other Than Strength and Physical Function," was published in the August issue of the journal Neurology.

This was a prospective study of consecutive patients seen at the Hershey Medical Center ALS clinic. Ninety-six patients were enrolled in the study with patients ranging in age from 23 to 80.

ALS is also known as Lou Gehrig's disease and is named after the baseball player who died of ALS. It is a neurologic disorder that affects about 30,000 people in the United States. Its cause remains unknown and there is no cure.

The problem is a progressive degeneration of nerve cells called motor neurons in the central nervous system. The cells involved are those that control voluntary muscles, so there is weakness and wasting of muscles controlled by the affected nerve tissue. The onset is gradual and commonly localized to one part of the body initially. As the disease progresses, its effects become more widespread.

Simmons and his team used a variety of standardized testing for muscle strength and physical function as well as QOL questionnaires. The average patient rated QOL as greater than 7 on a scale of 1 to 10. Fifty-three percent of patients rated QOL as 8 or greater, this despite muscle strength and function ratings that were often quite low.

"The generally high patient assessment of QOL was striking, despite the presence of a terminal illness and decreased measures of strength and function in many patients," reports Simmons.

He also reports that spirituality and religion were also measured using standard testing. Simmons says spiritual factors and support systems also appear to play important roles in QOL assessments.

He emphasized that much of the care for patients with ALS must focus on symptom relief, comfort and psychological support.

Simmons' research was supported by a Clinical Management Research Grant from the ALS Association.

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