title: Experience matters: neurologists' perspectives on ALS patients' well-being.
abstract: Despite the fatal outcome and progressive loss of physical functioning in amyotrophic lateral sclerosis (ALS), many patients maintain contentment in life. It has been shown that non-professionals tend to underestimate the well-being of patients with ALS, but professionals' perspective is yet to be studied. In total, 105 neurologists with varying degrees of experience with ALS were included in an anonymous survey. They were asked to estimate the quality of life and depressiveness of ALS patients with artificial ventilation and nutrition. Physicians' estimations were compared with previously reported subjective ratings of ALS patients with life-prolonging measures. Neurologists with significant experience on ALS and palliative care were able to accurately estimate depressiveness and quality of life of ALS patients with life-prolonging measures. Less experienced neurologists' estimation differed more from patients' reports. Of all life-prolonging measures neurologists regarded invasive ventilation as the measure associated with lowest quality of life and highest depressiveness of the patients. Experienced neurologists as well as neurologists with experience in palliative care are able to better empathize with patients with a fatal illness such as ALS and support important decision processes.
authors.affiliation: Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany.
authors.forename: Helena E A
authors.initials: HE
authors.lastname: Aho-Özhan
authors.affiliation: Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany.
authors.forename: Sarah
authors.initials: S
authors.lastname: Böhm
authors.affiliation: Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany.
authors.forename: Jürgen
authors.initials: J
authors.lastname: Keller
authors.affiliation: Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany.
authors.forename: Johannes
authors.initials: J
authors.lastname: Dorst
authors.affiliation: Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany.
authors.forename: Ingo
authors.initials: I
authors.lastname: Uttner
authors.affiliation: Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany. albert.ludolph@rku.de.
authors.forename: Albert C
authors.initials: AC
authors.lastname: Ludolph
authors.affiliation: Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany.
authors.forename: Dorothée
authors.initials: D
authors.lastname: Lulé
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications / Q000175:diagnosis* / Q000453:epidemiology / Q000523:psychology*; D003863:Depression / Q000209:etiology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D000072141:Neurologists; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life / Q000523:psychology*; D012720:Severity of Illness Index; D018709:Statistics, Nonparametric; D011795:Surveys and Questionnaires
keywords: Amyotrophic lateral sclerosis (ALS); Depression; Life-prolonging measures; Physician; Quality of life