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Abstract

Developments in amyotrophic lateral sclerosis research and care delivery have created new arenas, and new dilemmas, for patients’ decision-making. This review explores three aspects of amyotrophic lateral sclerosis patient-centered care and decision-making: patient-centered service delivery through the expanding multidisciplinary team; decision-making for genetic testing and the implications of undergoing testing; and development of user-designed decision support tools to help patients and families make decisions as their choices become more complex. Until a cure is found, well-timed and effective decision-making will rely on patient and family preferences to guide them through an increasingly complicated disease landscape.
Original languageEnglish
Pages (from-to)377-386
Number of pages10
JournalNeurodegenerative Disease Management
Volume7
Issue number6
DOIs
Publication statusPublished - 22 Nov 2017

Bibliographical note

Copyright the Author(s) 2017. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

  • multidisciplinary care
  • decision support tools
  • Genetic counselling
  • genetics
  • genetic counseling
  • decision-support tools
  • multidisciplinary care

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