OBJECTIVES: As existing data are limited, this online survey assessed cancer-related burden in a/mNSCLC.

METHODS: Eligible adults resided in the US or UK and had a/mNSCLC that was stable or responded to first-line chemotherapy. Structured online surveys collected data on travel time to the treatment clinic, health-related quality of life (HRQOL), and employment. The EQ-5D-3L questionnaire assessed HRQOL. EQ-5D-3L utility scores were calculated by subtracting descriptive EQ-5D values from 1 (denotes best health status). Work productivity and activity impairment was also evaluated.

RESULTS: Among the 48 US and 34 UK patients surveyed, mean (SD) age was 46.1 (11.8) years, and 78% were male. Overall, 25.6% of patients had brain metastases (mean age, 41.7 years with brain metastases vs 54.0 years without brain metastases; P<0.05). Clinic travel times were substantial (58.5% traveled >0.5-to-≤1 hour, 13.4% traveled >1-to-≤2 hours, and 2.4% traveled >2 hours), and 56.1% required a caregiver to drive them. In total, 67.1% of patients were employed. Among the 78 patients with plausible working hours, the mean percentage of work time missed was 24.5%; mean percent impairment while working, 73.5%; and mean activity impairment due to NSCLC, 71.0%. Overall, 48.8% of patients had no problems walking; 48.8% had problems washing or dressing. Most (73.2%) had difficulties in or were unable to perform usual activities, 74.4% had moderate to extreme pain/discomfort, and 58.5% were moderately or extremely anxious or depressed. Mean (SD) EQ-5D-3L utility score was 0.637 (0.216) (US value set) and 0.516 (0.308) (UK value set); scores were significantly lower with than without brain metastasis (P<0.05).

CONCLUSIONS: This survey revealed a/mNSCLC to be associated with high real-world burden. Notably, one-quarter of patients had brain metastases, which may have contributed to the impairment reported. Novel treatments, particularly those that could treat or prevent brain metastases, are needed to mitigate this burden.