Identification of Existing Resources
The cost of medical care is especially high in ALS because many patients require respiratory support. Medications such as riluzole are expensive and can be discontinued during the final stages of life. Procedures, such as placement of PEG or tracheostomy, also incur surgical costs. These are only a few of the direct costs associated with care, and the indirect costs (lost work income and out-of-pocket expenses) also escalate management costs for patients with ALS (Appendix E).
Identification of Existing Gaps
There are little data on the cost of care and hospitalization for patients with ALS. Most studies are done in association with treatment trials, and there is no analysis or evaluation of indirect costs (e.g., loss of income).
Additionally, there are no studies of costs associated with end-of-life care, no prospective studies comparing cost-to-quality of different care delivery modes (e.g., community versus tertiary care) and no analysis of assessing the cost of caregiving to employers.
Recommendations to the Field
[ 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.