D.1 Feasibility and impact of palliative care at any stage of amyotrophic lateral sclerosis

Abstract

Background: Although palliative care (PC) is recommended for patients with amyotrophic lateral sclerosis (ALS), many patients receive PC very late or not at all. Our study goals included 1) determing the feasibility of early PC 2) describing patient/caregiver satisfaction with early PC and 3) measuring the impact of early PC on quality of life (QOL) and mood. Methods: Patients followed at the multidisciplinary ALS clinic in Ottawa, Canada and their caregivers were eligible for the study irrespective of duration or severity of disease. All participants completed questionnaires tracking QOL and mood and all were offered a palliative care consultation. Participants completed a satisfaction survey post-PC consultation. Results: 32 patients and 20 caregivers received a PC consultation, conducted virtually. All of them found the consult beneficial and none of the patients reported preferring the consultation later in their illness. The PC consultations were most highly rated by patients with high levels of anxiety and worse bulbar function, and by caregivers of patients with low function. There was no statistically significant change in mood or QOL compared to the 7 participants who declined PC consultation. Conclusions: PC consultations are feasible and beneficial at all stages of illness. Patients with anxiety and bulbar dysfunction may benefit most.