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.
[ Go Up ]
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.