An evidence-based determination of issues affecting quality of life and patient-reported outcomes in lung cancer: Results of a survey of 660 patients

INTRODUCTION: Identifying issues of importance for patients with lung cancer is critical in individualizing care and developing effective quality of life instruments based on evidence. This study was conducted to provide enhanced content validity for measures assessing quality of life and patient-reported outcomes (PROs). METHODS: We conducted an anonymous, cross-sectional, electronic web-based survey of 660 lung cancer patients. The survey asked patients to rank 20 quality of life issues on a 5-point scale ranging from "not important at all" to "very important". Analysis was obtained using key factors such as stage of disease, performance status, and gender. RESULTS: The survey was completed by 297 males and 363 females (median age 62 years). The top five rated issues were: quality of life, maintaining independence, ability to perform normal activities, ability to sleep, and not being fatigued. The issues of importance were all ranked, using the two highest categories ("very important" and "important") by at least 90% of patients. Although symptoms are important to patients, they were not the most highly ranked issues of concern; instead, global issues illustrating the effect of the symptoms on the patient, such as quality of life, maintaining independence, and performing normal activities were ranked highest. CONCLUSIONS: This is the largest analysis of evidence-based data determining content validity for quality of life and PROs as indicated by patients. These results provide greater confidence that the content of lung cancer quality of life measures is appropriate. In addition, the survey clearly demonstrates that PRO measures that only evaluate symptoms are not fully responding to patient-expressed needs.