Patient-centered decision making in amyotrophic lateral sclerosis: where are we?
- Publisher:
- Future Medicine Ltd
- Publication Type:
- Journal Article
- Citation:
- Neurodegener Dis Manag, 2017, 7, (6), pp. 377-386
- Issue Date:
- 2017-12
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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.
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