Promoting Excellence : ALS Report to the Field : Cost of Care


Executive Summary
Report to the Field

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

Practice Recommendation

  • Follow evidence-based guidelines for treating terminal phase symptoms.
  • Limit medications at the end of life that are normally used for altering disease course.
  • Encourage discontinuation of all disease-specific medications (e.g., antioxidants, anti-inflammatory drugs and antiglutamate agents) upon admission to hospice.

Research Recommendations

  • Initiate cost-benefit and cost-effectiveness studies for interdisciplinary care at ALS specialty centers and specialty neurology practices.
  • Develop a model of management that focuses on cost-effective care for patients with ALS during the end of life.
  • Develop a model of cost of care generated by a panel of experts.
  • Undertake cost-benefit studies of unplanned hospitalization.
  • Evaluate outcomes, including cost effectiveness, quality of life and cost-benefit analysis of home care, hospice, PEG and ventilation.

Policy Recommendations

  • Develop comprehensive and equitable policies and reimbursement for in-home care (including ventilation) and long-term care in ALS.
  • Emphasize economic benefits to payers of early and timely interventions to reduce unnecessary hospitalizations:
    • Provide a mechanism of funding for in-home care, including reimbursement for family caregivers' services;
    • Increase funding and cost coverage for long-term care and in-home ventilation costs; and
    • Expand hospitalization coverage (to 48 hours) for surgical interventions such as PEG.

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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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