Understanding the needs of people with ALS: a national survey of patients and caregivers

Autor: John Ravits, Chad Heatwole, Richard Bedlack, Miriam Galvin, James Chan, Lucie Bruijn, Neil Thakur, Orla Hardiman, Zachary Simmons, John F.P. Bridges, Kate Brizzi, Calaneet Balas, James D. Berry, Jill Yersak
Rok vydání: 2020
Předmět:
Zdroj: Amyotrophic lateral sclerosisfrontotemporal degeneration. 21(5-6)
ISSN: 2167-9223
Popis: Objective: Amyotrophic lateral sclerosis (ALS) has profound effects on people with ALS (PALS) and caregivers. There is a paucity of research detailing and comparing PALS and caregiver day-to-day perspectives of ALS. Methods: A survey developed collaboratively by The ALS Association and a panel of experts in ALS care was designed to broadly sample the experience of PALS and caregivers with respect to physical and emotional symptoms, the efficacy of treatment approaches, and goals for future treatments. Specific physical symptoms assessed consisted of fatigue, pain, weakness, shortness of breath, difficulty sleeping, speech problems, depression and other mood changes, and cognitive changes. PALS, caregivers of living patients with ALS (C-LPALS), and caregivers of deceased patients with ALS (C-DPALS) were contacted by email to participate in a 30-minute online survey. Results: 887 PALS, 444 C-LPALS, and 193 C-DPALS responded to the survey. In comparison to PALS, C-LPALS perceived that PALS had significantly higher rates of all surveyed symptoms except for pain and weakness. Caregivers self-reported higher stress levels than PALS (p p Conclusions: PALS and caregivers report a number of symptoms beyond weakness that affect daily life which may be targets of future interventions. There are opportunities to improve services and care for caregivers to reduce the burden of illness.
Databáze: OpenAIRE
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