Elisa Bianchi, E Beghi, Anisia Carlino, Federica Cerri, Christian Lunetta, Eugenio Vitelli, Ammar Al-Chalabi, Maurizio A Leone, Elisabetta Pupillo
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引用次数: 0
Abstract
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease requiring complex multidisciplinary care. As disability advances, patients' and caregivers' needs may diverge.
Objectives: 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; to understand the Italian ALS community's willingness to engage in research.
Methods: 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. Research on psychological and emotional support was rated more important by caregivers (70%) than patients (49%). QoL was higher among satisfied patients, with better ALSAQ-40 scores in mobility, daily activities, communication and emotional domains. Caregivers needing urgent psychological support were fewer among the satisfied (35%) than the not satisfied (50%), and SF-36 mental health scores were also higher in satisfied caregivers.
Conclusions: Incorporating both pALS and caregiver perspectives into clinical practice and research planning may enhance patient- and family-centered care, improve QoL, and better align healthcare research and resources with societal needs.
期刊介绍：
''European Neurology'' publishes original papers, reviews and letters to the editor. Papers presented in this journal cover clinical aspects of diseases of the nervous system and muscles, as well as their neuropathological, biochemical, and electrophysiological basis. New diagnostic probes, pharmacological and surgical treatments are evaluated from clinical evidence and basic investigative studies. The journal also features original works and reviews on the history of neurology.
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