SAN FRANCISCO — A Web-based survey of 660 patients with lung cancer will lead to four items being added to a widely used quality of life measure, according to a report at the World Conference on Lung Cancer.
Independence, sleep, anxiety, and depression will be included in the Lung Cancer Symptom Survey (LCSS), which has been unchanged for 20 years, said Dr. Richard J. Gralla, who led the study.
The anonymous survey was conducted among patients with lung cancer who registered with NexCura Inc., which provides Web-based tools to assist patients, caregivers, and providers in making evidence-based decisions. It was posted for 1 week in mid-2007 at www.nexcura.com
The respondents' median age was 62 years, 55% were female, and 77% reported having non–small cell lung cancer. In all, 25% of the patients reported having metastatic (stage IV) disease, 35% reported locally advanced (stage III) disease, 34% said they had no current evidence of disease, and 6% said they didn't know the extent of their disease, reported Dr. Gralla, chief of hematology and oncology at North Shore University Hospital in Manhasset, N.Y., and Long Island Jewish Medical Center in New Hyde Park, N.Y. He is a member of NexCura's medical editorial board.
At the time of the survey, 63% had received their diagnosis less than 1 year previously, 24% received it 1-2 years previously, and the remaining 13% had survived more than 2 years since their diagnosis.
Of 20 factors included in the survey, the top five that were rated as very important or most important were quality of life (80% of patients), independence (71%), not being a burden to others (65%), ability to perform normal activities (64%), and ability to sleep (63%). “We were surprised that the top five items were not symptoms of lung cancer,” Dr. Gralla said. “They're more global issues, and the symptoms come in a little bit lower” on the scale.
The next five factors were pain (59%), fatigue (58%), shortness of breath (58%), hemoptysis (58%), and depression (47%). Rated lowest were sexual difficulties (20% of patients ranked this as very important or most important), hoarseness (27%), problems with urination (27%), cough (28%), and meaning of life (32%).
Dr. Gralla acknowledged the limitations of the Web-based survey: Patients had to have access to a computer and some computer literacy. They had to have enough interest in their disease to go online for information and to complete a survey. And, as with all such surveys, patients who were very ill were less able to participate.
Still, the LCSS update is likely to be influential. “This hopefully will have some influence on how the [Food and Drug Administration] looks at evaluation of new drugs,” Dr. Gralla said at the meeting, sponsored by the International Association for the Study of Lung Cancer.
Dr. Gralla stated that he serves as an adviser on lung cancer to NexCura, and two of the four authors of the study are NexCura employees. The study received no specific funding.