The DOI matches its Crossref record; 27 of the 27 references it cites were found in a registry or an index.
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 [6–8]”
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“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]
In the citing paper
“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]
Citations
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Self-citationA cross sectional study on determinants of quality of life in ALS
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Cited by
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The EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis:, Andersen, P. M., Abrahams, S., Borasio, G. D., de Carvalho, M., Chio, A., Van Damme, P., Hardiman, O., Kollewe, K., Morrison, K. E., et al. (2012) · European Journal of Neurology · doi:10.1111/j.1468-1331.2011.03501.x · Cited by 1,117
Clinical diagnosis and management of amyotrophic lateral sclerosis
Hardiman, O. M., van den Berg, L. H., & Kiernan, M. C. (2011) · Nature Reviews Neurology · doi:10.1038/nrneurol.2011.153 · Cited by 618
Supportive and symptomatic management of amyotrophic lateral sclerosis
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Caregiver burden in amyotrophic lateral sclerosis: A systematic review
de Wit, J., Bakker, L. A., van Groenestijn, A. V., van den Berg, L. H., Schröder, C., Visser-Meily, J. A., & Beelen, A. (2017) · Palliative Medicine · doi:10.1177/0269216317709965 · Cited by 153
Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life
Chiò, A., Vignola, A., Mastro, E., Giudici, A. D., Iazzolino, B., Calvo, A., Moglia, C., & Montuschi, A. (2010) · European Journal of Neurology · doi:10.1111/j.1468-1331.2010.03016.x · Cited by 157
Self-citation
Metadata
- 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 › Nursing › Research and Theory › Nursing care and research
- Health Sciences › Medicine › Clinical 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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