Promoting Excellence : ALS Report to the Field : Quality of Life


аи Executive Summary
аиаReport to the Field

Identification of Existing Resources

Quality-of-life instruments are available for numerous diseases and can be helpful in assessing treatment satisfaction and overall patient well-being. The practical clinical goal is to use quality-of-life information to help identify areas of concern for patients in the terminal phase of ALS. Quality-of-life instruments can be used in a proactive manner so that resources, treatment modifications and lifestyle changes can all be implemented to address specific concerns. This initiative identified 19 different instruments that are available for assessing quality of life (See Appendix B).

Identification of Existing Gaps

Although clinicians are conscious of improving quality of life in patients with ALS and their caregivers, assessing quality of life and taking steps to improving it have been elusive. Most currently available quality-of-life instruments have not been validated in patients with ALS. An instrument to assess quality of life in ALS must evaluate the psychosocial status of patients during the end of life. Additionally, a better understanding is needed of factors that influence quality of life in patients with ALS and their caregivers.

Recommendations to the Field

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 Recommendation

Develop instruments designed to assess quality of life at the end of life 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 for more resources.

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