The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe
Abstract
The measurement of functioning and well-being from the perspective of the patient has in recent years become central to the assessment of health and the evaluation of treatment regimes. The past decade has seen an enormous growth in the application of measures designed to assess quality of life in a vast array of medical specialties. However, the use of such measures in neurology has been relatively limited, and this has certainly been the case in amyotrophic lateral sclerosis (ALS). The European ALS Health Profile Study is a longitudinal survey of patients diagnosed with ALS or other motor neurone diseases in which patients are asked to complete questionnaires concerning their subjective health status. Data from clinical assessments are also collected. It is intended that the information collected will provide more systematic and detailed evidence of the impact of the disease from the perspective of the patient. This contribution documents results from baseline assessment obtained from data supplied by clinicians, carers and patients themselves. Three outcome measures are assessed in this paper: the SF-36, a generic measure of well being and functioning, the ALS Functional Rating Scale and the Carer Strain Index. The evidence presented here suggests that these measures provide a meaningful and valid picture of the impact of the disease. The data indicate that ALS has substantial adverse effects both upon the functioning and well being of patients and carers, as well as an association between the emotional health status of patients and carers, and between the physical health status of patients and carers.
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Research has documented distress and burden experienced by MND family carers.
“Research has documented the distress and burden experienced by MND family carers [9-12]”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [11]
Family members caring for people with MND often encounter exceptional strain during caregiving due to the rapid and progressive nature of MND and its incapacitating effects.
“Family members caring for people with MND often encounter exceptional strain during the caregiving experience due to the rapid and progressive nature of MND coupled with the incapacitating effects of the disease.”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [11]
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Gołąb-Janowska, M., Wełnicka, A., Baumert, B., Machowska-Sempruch, K., Meller, A., Sobuś, A., Paczkowska, E., Kotlęga, D., Nowacki, P., & Machaliński, B. (2026) · Journal of Clinical Medicine · doi:10.3390/jcm15207937
- Authors
- Jenkinson, C., Fitzpatrick, R., Swash, M., & Peto, V.
- Affiliations
- University of Oxford (GB)
- University of London (GB)
- Venue
- Journal of Neurology
- Published
- 2000-11-29
- Volume
- 247
- Issue
- 11
- Pages
- 835-840
- ISSN
- 0012-1037 (ISSN-L)
- 0340-5354
- 1432-1459
- OpenAlex
- W2024951481
- Cited by
- 88
- References
- 14
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 3 · 2023: 1 · 2022: 1 · 2021: 1 · 2020: 1 · 2019: 1 · 2018: 3 · 2017: 3 · 2016: 3 · 2015: 6 · 2014: 5 · 2013: 8 · 2012: 6
- FWCI
- 2.18
- Type
- journal article
- Language
- nl
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of Neurology (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Keywords
- amyotrophic lateral sclerosis, quality of life, caregivers, motor neuron disease, SF-36, ALS Functional Rating Scale, patient-reported outcomes, emotional well-being, physical health, disease impact
- MeSH terms
- Adult, Aged, Amyotrophic Lateral Sclerosis, Europe, Female, Health Status, Humans, Male, Middle Aged, Quality of Life, Caregivers
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
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