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]
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“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
Cites
A self-rating depression scale
ZUNG, W. W. K. (1965) · Archives of General Psychiatry · doi:10.1001/archpsyc.1965.01720310065008 · Cited by 9,813
El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis
Brooks, B. R., Miller, R. G., Swash, M., & Munsat, T. L. (2000) · Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders · doi:10.1080/146608200300079536 · Cited by 5,433
Application of a multidimensional caregiver burden inventory
Novak, M., & Guest, C. (1989) · The Gerontologist · doi:10.1093/geront/29.6.798 · Cited by 1,205
Prevalence and patterns of cognitive impairment in sporadic ALS
Ringholz, G. M., Appel, S. H., Bradshaw, M. R., Cooke, N., Mosnik, D. M., & Schulz, P. E. (2005) · Neurology · doi:10.1212/01.wnl.0000172911.39167.b6 · Cited by 843
The overlap of amyotrophic lateral sclerosis and frontotemporal dementia
Lomen, C. E., Anderson, T. T., & Miller, B. L. (2002) · Neurology · doi:10.1212/wnl.59.7.1077 · Cited by 699
Resilience and Distress Among Amyotrophic Lateral Sclerosis Patients and Caregivers
Rabkin, J. G., Wagner, G. J., & Del Bene, M. (2000) · Psychosomatic Medicine · doi:10.1097/00006842-200003000-00020 · Cited by 288
Measuring Chronic Patients’ Feelings of Being a Burden to their Caregivers
Cousineau, N., McDowell, I., Hotz, S., & Hébert, P. C. (2003) · Medical Care · doi:10.1097/00005650-200301000-00013 · Cited by 261
The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease
Thommessen, B., Aarsland, D., Brækhus, A., Øksengaard, A. R., Engedal, K., & Laake, K. (2002) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.524 · Cited by 224
Caregiver burden and patients’ perception of being a burden in ALS
Chiò, A., Gauthier, A., Calvo, A., Ghiglione, P., & Mutani, R. (2005) · Neurology · doi:10.1212/01.wnl.0000162034.06268.37 · Cited by 223
Self-citationA cross sectional study on determinants of quality of life in ALS
Chio, A. (2004) · Journal of Neurology, Neurosurgery & Psychiatry · doi:10.1136/jnnp.2003.033100 · Cited by 190
Severity of Depressive Symptoms and Quality of Life in Patients with Amyotrophic Lateral Sclerosis
Kübler, A., Winter, S. M., Ludolph, A. C., Hautzinger, M., & Birbaumer, N. (2005) · Neurorehabilitation and neural repair · doi:10.1177/1545968305276583 · Cited by 164
GOLDSTEIN, L. H., ATKINS, L., LANDAU, S., BROWN, R., & LEIGH, P. N. (2006) · Psychological Medicine · doi:10.1017/s0033291706007124 · Cited by 123
Communication effectiveness of individuals with amyotrophic lateral sclerosis
Ball, L. J., Beukelman, D. R., & Pattee, G. L. (2003) · Journal of Communication Disorders · doi:10.1016/j.jcomdis.2003.09.002 · Cited by 113
Burden of care in amyotrophic lateral sclerosis
Hecht, M. J., Graesel, E., Tigges, S., Hillemacher, T., Winterholler, M., Hilz, M. J., Heuß, D. F., & Neundörfer, B. (2003) · Palliative Medicine · doi:10.1191/0269216303pm754oa · Cited by 108
Factors associated with carer strain in carers of people with multiple sclerosis
Chipchase, S. Y. (2001) · Disability and Rehabilitation · doi:10.1080/09638280110062158 · Cited by 91
Nelson, N. D., Trail, M., Van, J. N., Appel, S. H., & Lai, E. C. (2003) · Journal of Palliative Medicine · doi:10.1089/109662103322144736 · Cited by 87
Quality of life for ventilator-dependent ALS patients and their caregivers
Gelinas, D. F. (1998) · Journal of the Neurological Sciences · doi:10.1016/s0022-510x(98)00212-3 · Cited by 81
Tedman, B., Young, C. A., & Williams, I. R. (1997) · Journal of the Neurological Sciences · doi:10.1016/s0022-510x(97)00249-9 · Cited by 78
Mood disturbances in motor neurone disease
Moore, M. J., Moore, P. B., & Shaw, P. J. (1998) · Journal of the Neurological Sciences · doi:10.1016/s0022-510x(98)00203-2 · Cited by 77
Disparities in perceptions of distress and burden in ALS patients and family caregivers
Adelman, E. E., Albert, S. M., Rabkin, J. G., Del Bene, M. L., Tider, T., & O’Sullivan, I. (2004) · Neurology · doi:10.1212/01.wnl.0000125180.04000.a4 · Cited by 75
Bremer, B. A., Simone, A.-L., Walsh, S., Simmons, Z., & Felgoise, S. H. (2004) · Annals of Behavioral Medicine · doi:10.1207/s15324796abm2802_7 · Cited by 58
A neuropsychological investigation of dementia in motor neurone disease (MND)
Barson, F. P., Kinsella, G., Ong, B., & Mathers, S. (2000) · Journal of the Neurological Sciences · doi:10.1016/s0022-510x(00)00413-5 · Cited by 56
Trail, M., Nelson, N. D., Van, J. N., Appel, S. H., & Lai, E. C. (2004) · Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders · doi:10.1080/14660820310016075 · Cited by 49
Self-Reported Quality of Life in Amyotrophic Lateral Sclerosis
Nygren, I., & Askmark, H. (2006) · Journal of Palliative Medicine · doi:10.1089/jpm.2006.9.304 · Cited by 34
Physical decline and quality of life in amyotrophic lateral sclerosis
Hardiman, O. M., Hickey, A., & O'Donerty, L. J. (2004) · Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders · doi:10.1080/226-14660820410021294 · Cited by 29
Consecuencias emocionales del cuidado del paciente con esclerosis lateral amiotrófica
Paz-Rodríguez, F., Palos, P. A., & Pilar, Á. M. D. P. L. D. (2005) · Revista de Neurología · doi:10.33588/rn.4008.2004376 · Cited by 15
Psychosocial factors and cognition in amyotrophic lateral sclerosis
Grossman, A. B., & Bradley, W. G. (2003) · Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders · doi:10.1080/14660820310005554 · Cited by 10
Research works printed but not linked: 3
- Bungener C, Piquard A, Pradat P-F, Salachas F, Meininger V, Lacomblez L. Psychopathology in amyotrophic lateral sclerosis: a preliminary study with 27 ALS patients. ALS 2005;6:221–225.
- Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med 1995;9:207–219.
- Goldstein LH, Leigh PN. Motor neuron disease: a review of its emotional and cognitive consequences for patients and its impact on carers. Br J Health Psychol 1999;4:193–208.
Cited by
Sorted by citations
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
Hobson, E., & McDermott, C. J. (2016) · Nature Reviews Neurology · doi:10.1038/nrneurol.2016.111 · Cited by 175
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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