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

Publication ,  Journal Article
Brizzi, KT; Bridges, JFP; Yersak, J; Balas, C; Thakur, N; Galvin, M; Hardiman, O; Heatwole, C; Ravits, J; Simmons, Z; Bruijn, L; Chan, J ...
Published in: Amyotroph Lateral Scler Frontotemporal Degener
August 2020

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 < 0.001). 35% (135/383) of caregivers reported experiencing a devastating or near devastating financial impact of ALS and 64% (247/383) of caregivers felt their own health had worsened. Caregivers were significantly less likely to perceive a positive response to treatment in comparison to PALS (p < 0.001). 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.

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Published In

Amyotroph Lateral Scler Frontotemporal Degener

DOI

EISSN

2167-9223

Publication Date

August 2020

Volume

21

Issue

5-6

Start / End Page

355 / 363

Location

England

Related Subject Headings

  • Surveys and Questionnaires
  • Quality of Life
  • Mood Disorders
  • Humans
  • Caregivers
  • Amyotrophic Lateral Sclerosis
  • 3209 Neurosciences
  • 1109 Neurosciences
  • 1103 Clinical Sciences
 

Citation

APA
Chicago
ICMJE
MLA
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Brizzi, K. T., Bridges, J. F. P., Yersak, J., Balas, C., Thakur, N., Galvin, M., … Berry, J. D. (2020). Understanding the needs of people with ALS: a national survey of patients and caregivers. Amyotroph Lateral Scler Frontotemporal Degener, 21(5–6), 355–363. https://doi.org/10.1080/21678421.2020.1760889
Brizzi, Kate T., John F. P. Bridges, Jill Yersak, Calaneet Balas, Neil Thakur, Miriam Galvin, Orla Hardiman, et al. “Understanding the needs of people with ALS: a national survey of patients and caregivers.Amyotroph Lateral Scler Frontotemporal Degener 21, no. 5–6 (August 2020): 355–63. https://doi.org/10.1080/21678421.2020.1760889.
Brizzi KT, Bridges JFP, Yersak J, Balas C, Thakur N, Galvin M, et al. Understanding the needs of people with ALS: a national survey of patients and caregivers. Amyotroph Lateral Scler Frontotemporal Degener. 2020 Aug;21(5–6):355–63.
Brizzi, Kate T., et al. “Understanding the needs of people with ALS: a national survey of patients and caregivers.Amyotroph Lateral Scler Frontotemporal Degener, vol. 21, no. 5–6, Aug. 2020, pp. 355–63. Pubmed, doi:10.1080/21678421.2020.1760889.
Brizzi KT, Bridges JFP, Yersak J, Balas C, Thakur N, Galvin M, Hardiman O, Heatwole C, Ravits J, Simmons Z, Bruijn L, Chan J, Bedlack R, Berry JD. Understanding the needs of people with ALS: a national survey of patients and caregivers. Amyotroph Lateral Scler Frontotemporal Degener. 2020 Aug;21(5–6):355–363.

Published In

Amyotroph Lateral Scler Frontotemporal Degener

DOI

EISSN

2167-9223

Publication Date

August 2020

Volume

21

Issue

5-6

Start / End Page

355 / 363

Location

England

Related Subject Headings

  • Surveys and Questionnaires
  • Quality of Life
  • Mood Disorders
  • Humans
  • Caregivers
  • Amyotrophic Lateral Sclerosis
  • 3209 Neurosciences
  • 1109 Neurosciences
  • 1103 Clinical Sciences