Promoting Excellence : ALS Executive Summary : Quality of Life

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Assessing quality of life and psychosocial status and taking steps to improve them have been elusive goals at the end of life. Physicians need a better understanding of the factors that influence quality of life in patients with ALS and their caregivers.


Practice Recommendation

Use quality-of-life instruments in patients with advanced ALS during the end of life to help detect issues that should be addressed in order to improve the end of life (e.g., McGill QOL or Seiqol-DW patient generated measure of individual quality of life with high acceptance in ALS).


Research Recommendations

Develop instruments designed to assess quality of life at the end of life. This should be done by considering the following:

  • The physical and psychological comfort of the patient when completing an instrument (eliminate instruments that trigger psychological distress);
  • The time needed to complete the instrument; and
  • The ease of administration to patients with impaired communication abilities.

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.

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