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An observational st...
An observational study on quality of life and preferences to sustain life in locked-in state
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Kuzma-Kozakiewicz, Magdalena (author)
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- Andersen, Peter M., 1962- (author)
- Umeå universitet,Klinisk neurovetenskap
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Ciecwierska, Katarzyna (author)
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Vázquez, Cynthia (author)
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Helczyk, Olga (author)
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Loose, Markus (author)
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Uttner, Ingo (author)
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Ludolph, Albert C. (author)
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Lulé, Dorothée (author)
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(creator_code:org_t)
- Wolters Kluwer, 2019
- 2019
- English.
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In: Neurology. - : Wolters Kluwer. - 0028-3878 .- 1526-632X. ; 93:10, s. E938-E945
- Related links:
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https://doi.org/10.1...
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https://umu.diva-por... (primary) (Raw object)
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https://urn.kb.se/re...
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https://doi.org/10.1...
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Abstract
Subject headings
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- Objective: This is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme-Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).Methods: In this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale-revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory-12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.Results: The majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.Interpretation: Some patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Neurologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Neurology (hsv//eng)
Keyword
- Amyotrophic-lateral-sclerosis
- ALS patients
- Depression
- Ventilation
- Neurodegenerative Diseases
- Quality of Life
Publication and Content Type
- ref (subject category)
- art (subject category)
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