To assess the comfort and decision-making confidence of community physical and occupational therapists (PT/OT) in providing evidence-based care to individuals with amyotrophic lateral sclerosis (pALS).
While riluzole and edaravone are approved for disease modification in ALS, multidisciplinary supportive care remains the cornerstone of management. Physical and occupational therapy play key roles in maintaining function and quality of life, yet evidence-based guidance for these disciplines remains limited. Current recommendations are largely expert-driven, contributing to a gap between published literature and clinical practice in community rehabilitation settings.
A multidisciplinary educational session on the role of PT/OT in ALS care was developed and delivered by a neuromuscular physician and PT/OT specialists at the Louise Wilcox ALS Clinic of Rhode Island Hospital. The presentation was given to a community PT/OT agency who regularly provides outpatient PT/OT services to pALS, followed by pre- and post-session questionnaires assessing provider comfort and decision-making processes. Provider comfort items were rated on a 6-point Likert scale (1 = not comfortable, 6 = very comfortable), and decision-making items on a 5-point scale (1 = strongly disagree, 5 = strongly agree).
Eight pre-session and nine post-session surveys were collected; approximately 75% of respondents were PT/OT specialists with prior experience managing pALS. Following the intervention, participants reported greater comfort communicating with pALS, discussing prognosis, and individualizing resources. Decision-making confidence increased in identifying factors influencing treatment plans and considering alternative therapies. However, respondents remained less certain about the risks and benefits of specific treatment options and about patients’ understanding of these factors. While satisfaction with decision-making improved, responses largely remained neutral, reflecting persistent uncertainty.
This pilot educational intervention suggests that targeted outreach can improve provider comfort and confidence in managing ALS-related rehabilitation. Ongoing educational efforts and development of evidence-based PT/OT guidelines are needed to better support providers caring for this population.