title: Eye-tracking-based assessment suggests preserved well-being in locked-in patients.
abstract: We assessed quality of life (QoL) and psychological well-being in patients with amyotrophic lateral sclerosis-induced locked-in state and their next of kin in a fully unbiased manner using eye-tracking computer systems. Eleven of 30 screened patients and 9 next of kin completed study procedures. Patients reported good QoL, which appeared to be at the cost of the QoL of their next of kin. Next of kin rated their own or patients' QoL similarly, but they identified different areas as important as compared with patients. Our results are of importance for the discussion of end-of-life decisions and the evaluation of patients' presumed wishes as well as for psychosocial interventions. Ann Neurol 2017;81:310-315.
authors.affiliation: Department of Neurology, Technische Universität Dresden, Dresden.
authors.forename: Katharina
authors.initials: K
authors.lastname: Linse
authors.affiliation: Interactive Minds Research, Dresden.
authors.forename: Wolfgang
authors.initials: W
authors.lastname: Rüger
authors.affiliation: Interactive Minds Research, Dresden.
authors.forename: Markus
authors.initials: M
authors.lastname: Joos
authors.affiliation: Department of Neurology, Technische Universität Dresden, Dresden.
authors.forename: Henning
authors.initials: H
authors.lastname: Schmitz-Peiffer
authors.affiliation: Department of Neurology, Technische Universität Dresden, Dresden.|German Center for Neurodegenerative Diseases, Dresden Research Site, Dresden.|Department of Neurology, University of Rostock, Rostock, Germany.
authors.forename: Alexander
authors.initials: A
authors.lastname: Storch
authors.affiliation: Department of Neurology, Technische Universität Dresden, Dresden.|German Center for Neurodegenerative Diseases, Dresden Research Site, Dresden.
authors.forename: Andreas
authors.initials: A
authors.lastname: Hermann
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications*; D053483:Eye Movement Measurements; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009679:Nuclear Family / Q000523:psychology*; D010549:Personal Satisfaction; D011782:Quadriplegia / Q000209:etiology / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*