Driving a car is a task that many of us take for granted. But for people with neurodegenerative conditions, such as amyotrophic lateral sclerosis (ALS), who are faced with continual functional losses, driving can be an important part of maintaining their independence and their sense of normalcy.
“My objective as an occupational therapist to individuals with ALS is to try to empower them with some sense of control in an illness that is constantly challenging it,’’ says Kendra Berry, a registered occupational therapist (OT) who has worked at the ALS clinic at The Neuro since 2008.
While on-road assessments remain the gold standard, wait times at a recognized authority can be lengthy and costly, putting an undue burden on individuals with ALS. After a particularly difficult case involving driving, the ALS clinic team at The Neuro recognized that they needed to find a process to address driving in a consistent way with patients followed at the clinic.
“We reviewed the charts for a six-month period. Some patients were followed in our clinic for over a year before driving was ever discussed. Adaptations were underused -- we identified a potential 10 out of 15 that may have been candidates for adaptations to prolong driving safety,” says Berry.
Thanks to a grant from ALS Canada, the ALS team was given the opportunity to provide patients with ALS with subsidies to cover the costs of private on-road evaluations with certified OTs. This funding allows patients to have rapid access to on-road evaluation with the goal of promoting and prolonging safe driving.
In office assessment
A literature research that included provincial and federal driving guidelines, existing driving screening tools, and a pilot driving screening project performed in the United States, allowed the team to develop a driving assessment battery for our clinical setting. The tool was named the ALS Steering Wheel (ASW), a multi-disciplinary approach to assessing driving in patients with ALS.
The tool encompasses the complexities of an ALS diagnosis and the guidelines set forth by the SAAQ and CMA (Canadian Medical Association). The ASW includes medical, physical, cognitive, functional and social-spiritual components. It contains preventative and intervention cut-points that help guide the team in identifying the need for an on-road evaluation.
“We can't send all the patients for repeat road tests, so in-clinic evaluations are the next best thing and we're using them as indicators to highlight potential difficulties with driving,” says Berry.
The implementation of the ASW began in 2017. In the last three years, the COVID pandemic has presented challenges that have impacted the ability to execute the quality improvement project as planned. Despite these challenges, the team has continued to address driving with all of the patients followed in the clinic.
The pandemic continues to have its consequences felt. The current wait times for an OT on-road evaluation in a public rehab center ranges from 4-18+ months. The ALS team has allowed patients to have rapid and subsidized access to private on-road evaluations, often within a 2-week period.
In 2022, 15 on-road evaluations were performed. Of these evaluations 14 were performed with a certified OT; 12 of these evaluations were subsidized by the ALS Canada grant. The evaluations with the OTs allowed for the identification and installation of adaptations to promote and prolong driving safety for the ALS patients.
“I think it's absolutely imperative that patients feel supported throughout the entire process -- from the initial diagnosis to the eventual cessation of driving. It’s about finding function, finding independence and helping a patient achieve what's really important to them,” concludes Berry.