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 language | English |
|---|---|
| Pages (from-to) | 377-386 |
| Number of pages | 10 |
| Journal | Neurodegenerative Disease Management |
| Volume | 7 |
| Issue number | 6 |
| DOIs | |
| Publication status | Published - 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