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Therapeutic decisions in ALS patients: cross-cultural differences and clinical implications
Umeå University, Faculty of Medicine, Department of Pharmacology and Clinical Neuroscience, Clinical Neuroscience.
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2018 (English)In: Journal of Neurology, ISSN 0340-5354, E-ISSN 1432-1459, Vol. 265, no 7, p. 1600-1606Article in journal (Refereed) Published
Abstract [en]

Objective: Quantitative analysis of decision-making on therapeutic options in different sociocultural context in amyotrophic lateral sclerosis (ALS).

Methods: ALS patients (n = 244) were consecutively recruited in Germany (n = 83), Poland (n = 83), and Sweden (n = 78) in a prospective cross-cultural study (www.NEEDSinALS.com). They were interviewed on preferences for therapeutic techniques including invasive (IV) and non-invasive ventilation (NIV), as well as percutaneous endoscopic gastrostomy (PEG) and on hypothetical termination of these using quantitative questions. Using standardized questionnaires, religiousness, personal values, quality of life, and depressiveness were assessed.

Results: NIV was most frequently used in Germany and PEG in Sweden. Swedish patients were most liberal on initiation and termination of PEG, NIV and IV. Polish patients were mostly undecided and were least likely to consider discontinuing supportive management. Current use was partly associated with age, gender and state of physical function; also, financial support explained some variance. Future preferences on therapeutic options from the patient’s perspective were also closely associated with cultural factors. The more oriented towards traditional and conservative values, the less likely patients were to decide for invasive therapeutic devices (IV, PEG), the least likely to have ideations to discontinue any device and the more likely to have an undecided attitude.

Conclusions: Current use of therapeutic options is determined by medical condition in analogy to clinical guidelines. For future considerations, other factors such as cultural background are crucial, yielding hurdles to be regarded in the implementation of advanced directives in a multicultural environment.

Place, publisher, year, edition, pages
Springer Berlin/Heidelberg, 2018. Vol. 265, no 7, p. 1600-1606
Keywords [en]
Decision, Amyotrophic lateral sclerosis, Palliative care, Quality of life, Medical care, Culture
National Category
Neurology
Identifiers
URN: urn:nbn:se:umu:diva-150751DOI: 10.1007/s00415-018-8861-4ISI: 000436812900012PubMedID: 29728768Scopus ID: 2-s2.0-85046406572OAI: oai:DiVA.org:umu-150751DiVA, id: diva2:1239419
Available from: 2018-08-16 Created: 2018-08-16 Last updated: 2018-08-16Bibliographically approved

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Andersen, Peter M.Semb, OlofNackberg, Simona

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