A longitudinal study on quality of life and depression in ALS patient–caregiver couples
Abstract
OBJECTIVES: To evaluate the modification of quality of life (QoL) and depression in a series of amyotrophic lateral sclerosis (ALS) patient-caregiver couples during a period of 9 months and compare them to patients' ALS Functional Rating Scale (ALS-FRS). METHODS: Depression was assessed with Zung Depression Scale (ZDS) and QoL with McGill Quality of Life Questionnaire (MQoL). Caregivers' burden was assessed with Caregiver Burden Inventory (CBI), and patients' feeling to be a burden with the Self-Perceived Burden Scale (SPBS). RESULTS: Thirty-one ALS patient-caregiver couples were interviewed at baseline and after 9 months. The mean ALS-FRS score was 28.7 (SD 7) at baseline and 24.1 (6.9) at the second interview (p = 0.0001). Patients' mean MQoL score slightly increased from 6.8 (1.6) to 7 (1.1) (p = 0.07); their ZDS score slightly increased (43.2 [8.7] at baseline and 45.7 [9.3] at the second interview) but they remained in the not depressed range. Caregivers' mean MQoL score slightly decreased, and their mean ZDS increased from 38.9 (8.1) to 42.2 (8.7) (p = 0.02). The mean CBI score increased from 50.3 (17.6) to 55.8 (16.4) (p = 0.03). CONCLUSIONS: We found a substantial steadiness of quality of life and depression in patients with amyotrophic lateral sclerosis over a 9-month period, vs a significant increase of burden and depression of their caregivers.
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As the disease progresses, ALS caregivers experience heightened feelings of psychological distress and burden.
“as the disease progresses, ALS caregivers experience heightened feelings of psychological distress and burden [6–8]”
The observed increase in burden is consistent with research of burden over time in MND family carers.
“This effect is consistent with research of burden over time in MND family carers [15-17].”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [17]
Carer burden increases in MND family carers over time as patient function declines.
“Moreover, carer burden increases in MND family carers over time as patient function declines [15-17].”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [17]
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Self-citationDepression and QOL in patients with ALS: how do self-ratings and ratings by relatives differ?
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Self-citation
- Authors
- Gauthier, A., Vignola, A., Calvo, A., Cavallo, E., Moglia, C., Sellitti, L., Mutani, R., & Chiò, A.
- Affiliations
- University of Turin (IT)
- From the Department of Neuroscienze, University of Torino, Italy.
- ORCID
- Venue
- Neurology
- Published
- 2007-03-20
- Volume
- 68
- Issue
- 12
- Pages
- 923-926
- ISSN
- 0028-3878 (ISSN-L)
- 1526-632X
- OpenAlex
- W2011506008
- Cited by
- 256
- References
- 27
- Citations by year
- 2026: 1 · 2025: 10 · 2024: 10 · 2023: 23 · 2022: 9 · 2021: 16 · 2020: 11 · 2019: 10 · 2018: 13 · 2017: 14 · 2016: 14 · 2015: 19 · 2014: 17 · 2013: 13 · 2012: 17
- FWCI
- 38.28
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Neurology (publishedVersion)
- PubMed (publishedVersion)
- Institutional Research Information System University of Turin (University of Turin) (submittedVersion)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- amyotrophic lateral sclerosis, quality of life, depression, caregiver burden, self-perceived burden, functional decline, longitudinal change
- MeSH terms
- Adaptation, Psychological, Aged, Amyotrophic Lateral Sclerosis, Attitude to Death, Depression, Disability Evaluation, Female, Humans, Longitudinal Studies, Male, Middle Aged, Quality of Life, Caregivers, Cost of Illness, Disease Progression
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