The DOI matches its Crossref record; 30 of the 31 references it cites were found in a registry or an index.
Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study
Abstract
Background. The majority of people providing informal care for people with amyotrophic lateral sclerosis (ALS) are spouses. This prospective study set out to examine changes in and predictors of psychological distress in spouse carers of people with ALS. Method. Fifty spouse carers of people with ALS underwent an initial interview and at least 21 underwent two further interviews, at median intervals of approximately 5–6 months. They rated the functional impact of their partner's ALS on everyday activities and everyday cognitive, emotional and behavioural changes that might have occurred in the person with ALS. They also rated their own social support and marital relationship, and completed measures of mood, burden and strain. The ALS Severity Scale was also completed for their partner with ALS. Results. Over time, carers' psychological distress (a global measure combining mood, burden and strain) increased significantly. Initially carers' psychological distress was best predicted by the psychosocial impact of their spouse/partners' ALS, the extent to which their partner demonstrated emotional lability and how many other people were considered as dependents of the carer. Subsequently, carer distress was best predicted by an initial measure of negative social support and by their initial satisfaction with their social relationships. Conclusions. Despite the significant physical impairment associated with ALS, psychosocial factors appear important in determining short- and longer-term psychological well-being in carers of people with ALS and may help clinicians to predict which carers are likely to experience psychological difficulties as part of their caring role.
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“Previous research has shown that psychological distress and feelings of burden of ALS caregivers are associated with disease characteristics of the patient (i.e. physical and behavioral problems) but also with characteristics of the caregivers themselves, such as their coping style or whether they find positive meaning in caregiving [7, 9, 11–15].”
In the citing paper
“as the disease progresses, ALS caregivers experience heightened feelings of psychological distress and burden [6–8]”
In the citing paper
“Previous research on ALS caregiving revealed increasing levels of psychological distress in caregivers, a lack of existing interventions and an urgent need for support [7, 21].”
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 [16]
In the citing paper
“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 [16]
Citations
Cites
The Hospital Anxiety and Depression Scale
Zigmond, A. S., & Snaith, R. P. (1983) · Acta Psychiatrica Scandinavica · doi:10.1111/j.1600-0447.1983.tb09716.x · Cited by 47,139
Brooks, B. R. (1994) · Journal of the Neurological Sciences · doi:10.1016/0022-510x(94)90191-0 · Cited by 2,171
Subjective Burden of Husbands and Wives as Caregivers: A Longitudinal Study
Zarit, S. H., Todd, P. A., & Zarit, J. M. (1986) · The Gerontologist · doi:10.1093/geront/26.3.260 · Cited by 1,846
Normative data for the HADS from a large non-clinical sample
Crawford, J. R., Henry, J. D., Crombie, C., & Taylor, E. P. (2001) · British Journal of Clinical Psychology · doi:10.1348/014466501163904 · Cited by 815 · cited 2×
“The sum of the anxiety and depression scores was used to measure general psychological distress (Crawford et al. 2001).”
MethodAre amyotrophic lateral sclerosis patients cognitively normal?
Lomen-Hoerth, C., Murphy, J. M., Langmore, S. E., Kramer, J. H., Olney, R. K., & Miller, B. L. (2003) · Neurology · doi:10.1212/01.wnl.0000055861.95202.8d · Cited by 630
Treatment of pseudobulbar affect in ALS with dextromethorphan/quinidine
Brooks, B. R., Thisted, R. A., Appel, S. H., Bradley, W. G., Olney, R. K., Berg, J. E., Pope, L. E., & Smith, R. A. (2004) · Neurology · doi:10.1212/01.wnl.0000142042.50528.2f · Cited by 434
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
Identifying the concerns of informal carers in palliative care
Payne, S. A., Smith, P. W. F., & Dean, S. (1999) · Palliative Medicine · doi:10.1191/026921699673763725 · Cited by 250
Marriott, A., Donaldson, C., Tarrier, N., & Burns, A. S. (2000) · The British Journal of Psychiatry · doi:10.1192/bjp.176.6.557 · Cited by 249
The management of motor neurone disease
Leigh, P. N. (2003) · Journal of Neurology Neurosurgery & Psychiatry · doi:10.1136/jnnp.74.suppl_4.iv32 · Cited by 239
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Alquati, S., Ghirotto, L., Panfilis, L. D., Autelitano, C., Bertocchi, E., Artioli, G., Sireci, F., Tanzi, S., & Sacchi, S. (2022) · Brain Sciences · doi:10.3390/brainsci12121623 · Cited by 3
Predicting ALS informant distress from cognitive and behavioural change in people with ALS
Didcote, L., Vitoratou, S., Al‐Chalabi, A., & Goldstein, L. H. (2025) · Journal of Neurology · doi:10.1007/s00415-024-12847-7 · Cited by 3
Self-citationKnudsen, L., & Nikolajevic-Pujic, S. (2025) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2025.2523948 · Cited by 2
Experiential Learning Through ALS Caregiver Learning Labs: Occupational Therapy Student Outcomes
Hoey, S., & Henaughan, J. (2023) · Journal of Occupational Therapy Education · doi:10.26681/jote.2023.070302 · Cited by 2
Psychological Intervention in Amyotrophic Lateral Sclerosis: Suggestions for Clinical Practice
Marconi, A. (2017) · Journal of Psychology & Clinical Psychiatry · doi:10.15406/jpcpy.2017.08.00480 · Cited by 2
de Mello, M. P., Orsini, M. A., Nascimento, O. J. M., Pernes, M., Mauro, J., de Lima, B., Gress, C. H., & Leite, M. A. A. (2009) · Cited by 1
Outcome measures for informal carers of individuals with neurodegenerative conditions
Peters, M. (2011) · Cambridge University Press eBooks · doi:10.1017/cbo9780511975363.011 · Cited by 1
Motor neurone disease: insight into experience of family carers
Freer, S. (2010) · End of Life Journal · doi:10.1136/eolc-04-01.9 · Cited by 1
Rodriguez, J. L. (2010) · Digital Commons - PCOM (Philadelphia College of Osteopathic Medicine) · Cited by 1
Chiò, A. (2009) · Springer eBooks · doi:10.1007/978-0-387-78665-0_204 · Cited by 1
Qualidade de Vida de Cuidadores e Pacientes com Diagnóstico de Esclerose Lateral Amiotrófica
Orsini, M. A., Mello, M., Lisieux, D., Pássaro, C. P., Leite, M. A. A., Baldez, A. C., Silva, J. G., de Menezes, S. L. S., Porto, F. H. D. G., Machado, D., et al. (2001) · Revista Neurociências · doi:10.34024/rnc.2012.v20.8273 · Cited by 1
Matuz, T. (2009) · Cited by 1
Ng, L. (2011) · Minerva Access (University of Melbourne)
Langzeitsauerstofftherapie und Beatmung
Tempel, M. (2016) · Der Pneumologe · doi:10.1007/s10405-016-0035-4
The deglutition of patients with amyotrophic lateral sclerosis
Paim, É. D., Jarces, M. S., Zart, P., & Varela, D. L. (2016) · Acta Fisiátrica · doi:10.5935/0104-7795.20160023
A Reference Manual for Caregivers of Individuals with ALS
Pastir, J., & Woodard, B. (2013) · UND Scholarly Commons (University of North Dakota)
Chiò, A. (2011) · International Journal of Therapy and Rehabilitation · doi:10.12968/ijtr.2011.18.10.578
The deglutition of patients with amyotrophic lateral sclerosis
Paim, É. D., Jarces, M. S., Zart, P., & Varela, D. L. (2016) · Acta Fisiátrica · doi:10.11606/issn.2317-0190.v23i3a137658
Patient and Care-Partner Voices in ALS: Shaping Behavioral Health and Collaborative Care
Rush, C. L., Lester, E. G., Mehta, K., Seward, M., & Vranceanu, A. (2025) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2025.10.020
Metadata
- Authors
- GOLDSTEIN, L. H., ATKINS, L., LANDAU, S., BROWN, R., & LEIGH, P. N.
- Affiliations
- King's College London (GB)
- Venue
- Psychological Medicine
- Publisher
- Cambridge University Press (CUP)
- Published
- 2006-02-21
- Volume
- 36
- Issue
- 6
- Pages
- 865-875
- ISSN
- 0033-2917 (ISSN-L)
- 1469-8978
- OpenAlex
- W2044553216
- Cited by
- 123
- References
- 31
- Citations by year
- 2025: 5 · 2024: 2 · 2023: 6 · 2022: 5 · 2021: 7 · 2020: 10 · 2019: 6 · 2018: 6 · 2017: 5 · 2016: 10 · 2015: 7 · 2014: 8 · 2013: 7 · 2012: 8
- FWCI
- 12.40
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Psychological Medicine (publishedVersion)
- PubMed (publishedVersion)
- UCL Discovery (University College London) (submittedVersion)
- Research Portal (King's College London) (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, psychological distress, informal care, caregiver burden, emotional lability, social support, marital relationships, predictors of distress, psychosocial impact, caregiver well-being
- MeSH terms
- Aged, Aged, 80 and over, Amyotrophic Lateral Sclerosis, Depressive Disorder, Major, Major Depressive Disorder, Female, Humans, Longitudinal Studies, Male, Middle Aged, Predictive Value of Tests, Prognosis, Prospective Studies, Psychology, Caregivers, Cost of Illness
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