Strengths and opportunities: Clinicians' perspectives on palliative care for Amyotrophic Lateral Sclerosis (ALS) in the United States

Strengths and opportunities: Clinicians' perspectives on palliative care for Amyotrophic Lateral Sclerosis (ALS) in the United States
Muscle & Nerve; by Kara E Bischoff, Gayle Kojimoto, David L O'Riordan, Yaowaree L Leavell, Samuel Maiser, Astrid Grouls, Alexander K Smith, Steven Z Pantilat, Benzi M Kluger, Ambereen K Mehta; 6/25
Half of ALS clinicians [surveyed] reported they are able to manage patients' pain (55%) and mood symptoms (52%) "very well." Fewer reported managing care partner needs (43%) and spiritual/existential distress (29%) "very well." Fifty-eight percent of pALS [people with ALS] are referred to outpatient PC and 69% to hospice at some point in the illness. ALS clinicians generally felt satisfied with PC teams' care, but PC clinicians were less confident managing motor symptoms (51% confident) and helping care partners understand how to provide care (51%) and use equipment (25%). Most clinicians felt the quality of PC provided by ALS (77%) and PC (90%) teams is good/excellent. However, qualitative comments highlighted that both ALS and PC clinicians have knowledge gaps, and collaboration between ALS and PC clinicians should increase.