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

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

Neurology

From the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany.

Published: September 2019

AI Article Synopsis

  • The study investigates the well-being and end-of-life preferences of ALS patients in a locked-in state in Poland as part of a broader EU research initiative.
  • Researchers conducted interviews and used various standardized questionnaires to assess patients' quality of life, depression, coping strategies, and preferences for life-sustaining treatments.
  • Results showed that many patients reported positive well-being despite severe limitations and wished to continue their current treatments, indicating a significant disparity between patient and caregiver perceptions of well-being.

Article Abstract

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.

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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6745736PMC
http://dx.doi.org/10.1212/WNL.0000000000008064DOI Listing

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