Changes Coming to Lung Cancer Symptom Survey

By Robert Finn
Elsevier Global Medical News

SAN FRANCISCO -- A Web-based survey of 660 patients with lung cancer will result in four new items being added to a widely used quality of life measure, according to a report at the World Conference on Lung Cancer.

The Lung Cancer Symptom Survey (LCSS) will be changed for the first time in 20 years, said Dr. Richard J. Gralla, who led the study. The four new items are independence, sleep, anxiety, and depression.

Intended to improve the content validity of LCSS, the anonymous survey was conducted among patients with lung cancer who registered with NexCura Inc., a company that 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, and was completed by 660 people.

A part of Thomson Reuters's Thomson Scientific & Healthcare marketing group, NexCura also offers market research services. 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., is a member of NexCura's medical editorial board.

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.

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.

Patients were asked to rank 20 factors on a 5-point scale ranging from "most important" to "not important at all." The top five factors 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%). At the bottom of the scale were sexual difficulties (with 20% of patients ranking this as very important or most important), hoarseness (27%), problems with urination (27%), cough (28%), and meaning of life (32%).

With two exceptions, patients with metastatic disease ranked the factors similarly to those with no evidence of disease. Dr. Gralla said, "The two notable differences, and not surprisingly, were pain--those with metastatic disease took the No. 6 item from the whole group and raised it to the third most important item, [whereas] those with no evidence of disease had it go down to nine--[and] hemoptysis remained a not very important item (No. 9) for those with metastatic disease, but was raised up higher [ranking sixth] for those with no evidence of disease."

Dr. Gralla acknowledged that the Web-based survey had a number of limitations.

For example, patients had to have access to a computer and some degree of computer literacy. They had to have enough interest in their disease to go online for information and to complete a survey form. And, as with all such surveys, patients who were very ill were less able to participate.

Nevertheless, the changes in the LCSS resulting from the survey are 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, which was 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.