The Patient Experience of Cancer-Related Cachexia: Implications for Patient-Reported Outcomes Measures.

Background: Understanding the patient experience, including symptoms and impacts, of cancer-related cachexia is an important step in developing and validating patient-reported outcome measures that can support the subsequent development of new treatments. The Functional Assessment of Anorexia-Cachexia Therapy-5-item anorexia-related symptoms scale (FAACT-5IASS) is an outcome measure that may be suitable for the assessment of cachexia in patients with cancer. The objective of this analysis was to better understand the patient experience of cachexia based on qualitative interviews with patients. Methods: Concept elicitation interviews were conducted with patients with cancer and cachexia to understand key symptoms and their impacts. Outputs from the interviews were also used to confirm the relevance and content validity of the FAACT-5IASS for characterizing the identified cachexic symptoms. Results: Patients (N = 20) with non-small-cell lung (n = 8), pancreatic (n = 5), or colorectal (n = 7) cancer participated in interviews. Patients identified lack of appetite, nausea (and vomiting when describing nausea), and fatigue as key symptoms, although nausea and vomiting were primarily attributed to chemotherapy rather than specific to cachexia. These symptoms were reported as the most bothersome with negative impacts on appearance, physical function, social activities, and moods/emotions. Post-hoc analysis of the interviews supported the relevance of 4 out of 5 concepts in the FAACT-5IASS (having good appetite, satiety, food tasting unpleasant, and interest in food when eating). Conclusions: This qualitative research identified the importance of assessing key symptoms and impacts of cachexia using patient-reported measures that are conceptually relevant.