A recent review, entitled, “Patient-Perceived Outcomes and Quality of Life in ALS”, which was published in the journal Neurotherapeutics last December 11, 2014, examined current evidence concerning the Quality of Life assessment measures for patients with amyotrophic lateral sclerosis (ALS). The review conducted by Zachary Simmons from the Department of Neurology, Penn State Hershey Medical Center, Hershey, USA.
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neurological disease that attacks the nerve cells responsible for controlling voluntary movement. The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons. At the moment, the only available symptomatic treatment for the condition is a drug called, riluzole, which has demonstrated efficacy in altering the natural progression of ALS. The perceived benefits of riluzole by ALS patients is meaningful, and can be assessed with the concept of Quality of Life.
In the article, Simmons argues that current outcome measures to assess patients with ALS have discrepancies in features such as strength and physical function, and patient-perceived measures of wellbeing. In terms of measuring patient-perceived wellbeing, the construct of Quality of Life (QOL) is one of the more robust concepts in clinical practice to assess patient perceptions. However, QOL assessments in ALS patients remains underused in today’s clinical practice.
The instruments used to assess QOL generally measure health-related QOL (HRQOL), which includes physical and mental wellbeing, or global QOL – a wider concept involving questions that are not only related to the patient’s health status, but also to the status of daily life routines. Both these concepts can be adapted to specific diseases.
In the review, Simmons suggests that the choice of a QOL instrument depends on whether the setting is routine patient care or clinical research, whether or not the outcome of a specific intervention is being assessed, and upon the expected efficacy or toxicity of the intervention.
Simmons adds that the current status of the Quality of Life assessment is clinical practice is somewhat difficult, but should be prioritized as a reliable and adequate measure of treatment efficacy, as it is one of the most used variables in research.