Cancer cachexia: a caregiver and advocate perspective.

PURPOSE: To provide a caregiver and advocate perspective on how patients and families experience cancer cachexia, and to evaluate recent progress in the development of educational resources and targeted advocacy efforts focused on cancer cachexia.

RECENT FINDINGS: Cachexia is often not discussed with patients in the clinical care setting. Online educational material that patients and caregivers find can be confusing and contradictory. Patients may find themselves searching the academic literature, where they encounter a host of candidate therapies that have not yet translated to the clinic. Advocacy efforts focused on cachexia exist and are creating patient materials.

SUMMARY: In the absence of learning about cachexia within the clinical care setting, patients and caregivers seek their own course of discovery and treatment using online resources. Online material is of variable quality and consistency. The absence of established interventions creates further confusion. However, advocacy efforts that center around cachexia awareness and education do exist and are progressing.