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

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