An observational study on quality of life and preferences to sustain life in locked-in state

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Kuzma-Kozakiewicz, Magdalena (author)

An observational study on quality of life and preferences to sustain life in locked-in state

Article/chapterEnglish2019

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Wolters Kluwer,2019
electronicrdacarrier

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LIBRIS-ID:oai:DiVA.org:umu-168586
https://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-168586URI
https://doi.org/10.1212/WNL.0000000000008064DOI

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Language:English
Summary in:English

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SwePubSwePub

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Subject category:ref swepub-contenttype
Subject category:art swepub-publicationtype

Notes

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 and genre

MEDICIN OCH HÄLSOVETENSKAP Klinisk medicin Neurologi hsv//swe
MEDICAL AND HEALTH SCIENCES Clinical Medicine Neurology hsv//eng
Amyotrophic-lateral-sclerosis
ALS patients
Depression
Ventilation
Neurodegenerative Diseases
Quality of Life

Added entries (persons, corporate bodies, meetings, titles ...)

Andersen, Peter M.,1962-Umeå universitet,Klinisk neurovetenskap(Swepub:umu)pean0001 (author)
Ciecwierska, Katarzyna (author)
Vázquez, Cynthia (author)
Helczyk, Olga (author)
Loose, Markus (author)
Uttner, Ingo (author)
Ludolph, Albert C. (author)
Lulé, Dorothée (author)
Umeå universitetKlinisk neurovetenskap (creator_code:org_t)

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In:Neurology: Wolters Kluwer93:10, s. E938-E9450028-38781526-632X

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MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Clinical Medicin ...; and Neurology

Articles in the publication: Neurology

By the university: Umeå University

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