News from ALSA: Clinical Update
June 10, 2003

The results of an ALSA-supported clinical management research study are reported in the May 2003 issue of the journal, Neurology (60:1527-1529) (www.neurology.org).

In the article titled, "Religiousness is related to quality of life in patients with ALS," Zachary Simmons, MD, principal investigator and medical director of the certified ALSA Center at The ALS Clinic at Penn State Milton S. Hershey Medical Center, presented findings from a quality of life (QOL) study of 49 people with ALS.

Dr. Simmons describes the study results and conclusions in saying, "Our earlier studies had suggested that spirituality is involved in maintaining quality of life in individuals with ALS. This study reinforces that view, particularly as the disease advances. Religion and spirituality do not play important roles for all individuals with ALS, but we must be aware that these are important factors for some of our patients. If our findings are confirmed, then we should explore the role of faith-based interventions as a means of maintaining and improving quality of life for some individuals with ALS."

Until now, quality of life for people with ALS has been studied and considered almost exclusively in terms of the person's physical function. Little attention has been given to spiritual, religious, psychological and other non-physical aspects of life. The work of Dr. Simmons and his colleague is important for encouraging a broader view of what constitutes quality of life for individuals -- what things do and do not impact on their quality of life. Understanding what healthcare providers, family members and friends can do to help improve the quality of life of a person with ALS is important. Determining how clinical drug trials and medical interventions such as feeding tubes and noninvasive ventilation impact quality of life will help improve care and can increase the quality of life for people with ALS.

"This study demonstrates the importance of spiritual/religious factors in the quality of life of ALS patients as the disease progresses. Since spiritual/religious factors can contribute so significantly to QOL we must view it as an integral component of care for our ALS patients. Further work needs to examine specific interventions or practices that will support spirituality in our patients and the subsequent effect on QOL," comments Susan Walsh, RN, MSN, nurse at The ALS Clinic at Penn State Milton S. Hershey Medical Center and with The ALS Association's Greater Philadelphia Chapter.

The ALS Association has funded three studies conducted by Dr. Simmons and his team that have resulted in a program of research into factors related to quality of life for people with ALS and their family caregivers. The current phase of the research includes the development and testing of an ALS-specific quality of life questionnaire to be used to measure the effects of treatments on a person's quality of life.

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