Supplemental Material for: Needs and Expectations of ALS Patients and Caregivers: An Integrated Perspective

As disability advances, patients’ and caregivers’ needs may diverge. Methods: theobjectives of the study were: to assess needs, priorities and satisfaction with care among people with ALS (pALS) and their caregivers; to examine the association between satisfaction and Quality of life (QoL); to explore differences according to clinical characteristics; tounderstand the Italian ALS community's willingness to engage in research.

In this cross-sectional multicentre study, 154 pALS and 211 caregivers were recruited (July 2021–November 2022). Structured interviews explored information received, care priorities, research expectations and satisfaction.Answers to the interview were compared between patients and caregivers and between different patients’ subgroups with the chi-square or the Fisher’s exact test. The scores of QoL questionnaires were compared between satisfied vs. unsatisfied with the Wilcoxon-Mann-Whitney test in patients (ALSAQ-40) and caregivers (SF-36).Results:Patients prioritized finding a cure (95%) and overcoming disease-related limitations (72%) over safe and tolerable drugs (55%), similarly to caregivers.