Study of How Physical Functioning Affects Quality of Life in Adults with ALS at TidalHealth Peninsula Regional

What this Trial Is About

Amyotrophic Lateral Sclerosis ALS is a serious neurodegenerative disease where motor neuron cells in the brain and spinal cord gradually deteriorate and die, leading to severe physical decline. Since there is currently no cure, this study focuses on understanding factors that affect the quality of life QoL for people diagnosed with ALS. Researchers aim to explore how physical functioning and disease stage relate to patients reported quality of life over time, addressing gaps in knowledge about these impacts. This is a prospective, longitudinal observational study conducted at TidalHealth Peninsula Regional. Participants will complete the Amyotrophic Lateral Sclerosis Assessment Questionnaire ALSAQ-40 for quality of life every other routine clinic visit, while their physical function will be measured at every visit using the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised ALSFRS-R. Disease severity will also be assessed regularly using the Kings Clinical Severity Staging System. The study will continue for up to two years. During the study, participants will attend their usual care clinic visits where standard evaluations of function and disease stage will be recorded. They will complete quality-of-life questionnaires at alternating visits over the two-year period. Researchers will analyze the relationship between functional scores and quality of life scores and how disease progression affects this link. This study helps identify factors influencing life quality in ALS patients while monitoring changes over time under typical clinical care.

Impact of Physical Functioning on Patient-Reported Outcomes in ALS Patients at TidalHealth