Amyotrophic lateral sclerosis (ALS) is often seen as a diagnosis of last resort, where all other diagnoses need to be ruled out before a definitive diagnosis is established of ALS. With that being said, individuals will often continue to progress at a rapid rate and end up with a final diagnosis mid-stage of the disease, at which point they require multi-disciplinary rehabilitation services, assistive devices, and other such tools to maintain functional independence.
Power chairs are often an endpoint for many patients, and they cost upwards of $30,000. Many insurance companies require a definitive diagnosis of ALS in order to start the power chair process, which takes 4-6 months from start to finish to obtain the chair; however, the uncertainty regarding the diagnosis is of considerable concern.
Clinicians at Stanford saw that many patients were getting diagnosed later in their progression, at which point they needed the power chair at that given diagnostic visit. Therefore, concerns for the quality of life and reasonable extensions of insurance were raised. They decided to collect data on ambulation, respiration, and total function over three years. The purpose was to see if we could mark the rate of decline, and create a functional cut-off point of four to six months prior to the date of non-ambulation to serve as a more appropriate time to initiate the power chair process.
This is a large data set containing N=180 participants with ALS. Our team is analyzing the data and pushing for publication.
Project Lead: Julie Fineman
Project Members: Haoyu Li Chelsea Macpherson