Promoting Excellence : ALS Report to the Field : Depression and Pseudobulbar Affect

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аи Executive Summary
аиаReport to the Field
аиаAppendices


Identification of Existing Resources

Behavioral distress in ALS is common and presents a number of different signs and symptoms, including depression and anxiety. With progression of motor neuron loss, pseudobulbar affect occurs in a group of patients with ALS. It presents as sudden onset of excessive laughing or crying, with no relevant trigger. The Practice Parameter reviewed the current management recommendations for patients with onset of these issues, which usually occur prior to the end of life. The few reports on the prevalence and management of behavioral symptoms at the end of life are reviewed in Appendix D.


Identification of Existing Gaps

Currently, there are no standardized algorithms available that instruct how and when health care providers should screen for behavioral comorbidities (e.g., anxiety, depression) at the end of life in ALS. With progression of the disease, testing for depression is more challenging and tools adapted for end-of-life screening for depression are lacking.

The clinical benefits of treating depression and pseudobulbar affect are not well studied in ALS. For example, the role of psychostimulants (methylphenidate) for depression at the end stages of other diseases (cancer, HIV/AIDS) offer therapeutic benefit; but, possible benefits of psychostimulants in ALS at the end of life have not been studied. Additionally, as the disease progresses and likelihood of depression and pseudobulbar affect (or other behavioral effects) increases, there are no protocols for preparing the patient and family for these changes that might occur.


Recommendations to the Field

Practice Recommendation

Screen for signs and symptoms of depression and anxiety in patients with ALS; offer treatment (e.g., SSRIs) and counseling for depression and anxiety, especially at the end of life.


Research Recommendations

  • Examine the epidemiology, cause and impact of depression during the end of life.
  • Investigate and standardize the optimal approach to screening and diagnosing depression, anxiety and pseudobulbar affect in patients with ALS during the end of life.
  • Investigate effective therapies for treatment of depression, anxiety and pseudobulbar affect during the end of life in patients with ALS.

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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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