Experience of weight loss and its burden in patients with non-small cell lung cancer: Results of an online survey.

71 Background: The main objectives of this study were to characterize and compare the burden of non-small cell lung cancer (NSCLC) patients who reported considerable weight loss ( ≥ 5% of their body weight in the past 6 months or ≥ 2% for a BMI less than 20 kg/m2) to those who did not. Methods: 95 advanced NSCLC patients were surveyed from the online patient-powered community PatientsLikeMe. Self-reported demographic and clinical characteristics were recorded. Appetite, distress and concerns, health-related quality of life (QLQ-C15-PAL) and anorexia-cachexia symptoms/concerns (FAACT A/CS) were summarized. The results obtained between patients who lost considerable weight and those who did not were compared, using a two-tailed t-test or a Kruskal-Wallis test. Patients with weight loss were additionally asked open-ended questions on burden and concerns. Results: 35 (37%) patients were classified as having considerable weight loss at the time of the survey and 60 (63%) where classified without. Most patients were female (81%), American (81%), and mean age was 59 years. 61% of patients indicated not receiving either chemotherapy or radiotherapy at the time of the survey. Patients with weight loss reported significantly (p < 0.05) lower overall quality of life (55.2 vs. 66.9), worsened anorexia-cachexia symptoms/concerns (30.7 vs. 36.0), and higher symptomology, specifically fatigue (64.8 vs. 49.1), nausea (19.5 vs. 9.2), and appetite loss (41.0 vs. 23.9) – than patients without weight loss. In addition, significantly more patients who lost weight reported moderate/high distress levels than patients who did not (71% vs. 38%). For patients with weight loss, change in food taste, fatigue, and decrease in appetite were the most frequently reported symptoms with the greatest impact on their lives. Conclusions: Our results support that weight loss negatively affects cancer patients’ quality of life and is associated with more distress and symptoms—particularly fatigue, and appetite loss. Weight loss-related symptoms also significantly impact their lives. Interventions targeted at maintaining/increasing body weight may help to improve well-being and reduce key symptoms in advanced NSCLC patients with considerable weight loss.