Research Watch Report: Quality of Life, Communication, and Swallowing in Individuals with Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis (ALS) is a progressive motor neuron disease that affects approximately 16,000 people in the United States at any given time (ALS Association, 2019). No effective treatments have been found, and the disease is fatal for most people within three to five years of diagnosis (National Institute of Neurological Disease and Stroke; NINDS, 2019). ALS symptoms may initially present in the spinal nerves (limb onset) or in the cranial nerves (bulbar onset). Regardless of initial presentation, as the disease progresses, motor neurons throughout the body degenerate, causing profound deficits across systems, such as speech production, deglutition, ambulation, and respiration.Learning OutcomesAfter this course readers will be able to: Identify basic terminology and concepts associated with ALS and the ICF.Discuss the rationale and clinical questions for each article summarized.Describe the basic methodology and findings of each article summarized.Discuss potential clinical applications of the research evidence reviewed.As there is not a definitive clinical diagnostic test or tool at present, diagnosis of ALS is contingent upon case history, symptoms, and ruling out other causes for the symptoms. Specifically, the revised El Escorial criteria (Brooks et al., 2000) are used to diagnose the disease, and include four elements: presence of lower motor neuron (LMN) symptoms; presence of upper motor neuron (UMN) symptoms; progressive increase in symptoms over time; and, the absence of confirmatory signs of other diseases. LMN symptoms include muscle wasting (not related to nutritional deficiencies), weakness, and fasciculations, while UMN symptoms include pathological reflexes and spasticity. Several other symptoms are associated with the diagnosis of ALS, but a discussion of these is beyond the scope of this article. Interested readers are directed to the ALS Association for more information about diagnosis and a number of other topics (http://www.alsa.org/).Given the significant deficits that result from ALS, as well as the nature of the prognosis, individuals with the disease may experience dramatic declines in quality of life (QOL) throughout the disease progression. The Centers for Disease Control (CDC) has determined that health-related QOL (HRQOL) and its influences on physical health and well-being should be tracked, and it has made improved HRQOL a goal of its national public health campaigns over the last two decades - Healthy People 2000, Healthy People 2010, and Healthy People 2020 (CDC, 2018). An individual’s HRQOL is defined as “. . . physical and mental health perceptions (e.g., energy level, mood) and their correlates—including health risks and conditions, functional status, social support, and socioeconomic status” (CDC, 2018). Studies of HRQOL have found relationships between that construct and several common chronic diseases (diabetes, cancer, hypertension) as well as risk factors for those diseases (CDC, 2018)....