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.
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This is an EU Joint Programme—Neurodegenerative Disease Research (JPND) project (01ED1405). The project is supported through the following organizations under the aegis of JPND—http://www.jpnd.eu, e.g., Germany, Bundesministerium für Bildung und Forschung (BMBF, FKZ), Sweden, Vetenskaprådet Sverige, Poland, Narodowe Centrum Badan´ i Rozwoju (NCBR). This work was additionally funded by the Deutsche Forschungsgemeinschaft (DFG, LU 336/13-2) and the Bundesministerium für Bildung und Forschung (BMBF, #01GM1103A).
Conflicts of interest
The authors declare that they have no conflict of interest.
The study was approved by the ethics committees of the University of Ulm and the University of Berlin and has, therefore, been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. All participants gave informed consent prior to their inclusion in the study.
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Aho-Özhan, H.E.A., Böhm, S., Keller, J. et al. Experience matters: neurologists’ perspectives on ALS patients’ well-being. J Neurol 264, 639–646 (2017). https://doi.org/10.1007/s00415-016-8382-y
- Amyotrophic lateral sclerosis (ALS)
- Quality of life
- Life-prolonging measures