Patients' and Caregivers' Perceptions of Specialty Palliative Care for Amyotrophic Lateral Sclerosis: A Multicenter Evaluation.

Abstract

Introduction/aims: Specialty palliative care (SPC) aims to optimize quality of life for people with life-limiting illnesses. Previous studies support benefits of SPC for people with amyotrophic lateral sclerosis (pALS) and their caregivers; however, few studies have compared patient and caregiver experiences with ALS care and SPC.

Methods: An online survey assessing satisfaction with care was distributed to pALS and caregivers who had received SPC. Those who completed the survey were also invited to participate in a semi-structured interview.

Results: Thirty-four people (10 pALS, 25 caregivers) from 26 ALS clinics in 20 states completed the survey. Sixteen also provided a qualitative interview. Respondents were most commonly satisfied with their ALS team's ability to answer questions (81%), counsel them regarding ALS medications (78%), and manage motor symptoms (77%). Respondents were least commonly satisfied with their ALS team's ability to manage mood (50%), address spiritual/existential concerns (48%), and help them find in-home care providers (38%). SPC was initiated an average of 14.6 months after ALS diagnosis. Respondents were most commonly satisfied with their SPC team's responsiveness to time-sensitive needs between scheduled visits (82%) and management of mood (80%) and non-pain physical symptoms (73%). Respondents were least commonly satisfied with their SPC team's ability to help with equipment needs (52%), make decisions about procedures (50%), and find in-home caregivers (46%). Interviews highlighted the emotional support and care coordination that SPC teams provide.

Discussion: pALS and caregivers identified distinct and complementary strengths of ALS and SPC teams, suggesting that collaboration between teams may provide the most comprehensive care.