Studies show LAM patients participate in clinical trials to help others, not themselves

May 14, 2009

CINCINNATI--Two recent studies by researchers at the University of Cincinnati (UC) bring to light interesting findings about the diagnosis of the rare lung disease Lymphangioleiomyomatosis ( LAM) and the reasons LAM patients participate in research studies.

Brent Kinder, MD, Frank McCormack, MD, and Jared Hagaman, MD, working with colleagues in the division of pulmonary, critical care and sleep medicine at UC, found that patients with LAM were more likely to participate in clinical trials because of a shared cause and a feeling of altruism, as opposed to personal benefit.

In addition, this team found that CT scans given to young women who come to the emergency room for the first time with a collapsed lung are cost-effective and beneficial.

These findings will be presented at the American Thoracic Society International Conference in San Diego May 15-20.

LAM is a rare but serious lung disease that occurs when an unusual type of cell begins to grow out of control and spread to restricted areas in the body, including the lungs, kidneys, lymph nodes and vessels.

In the first study, 918 LAM patients in North America were surveyed to determine who participated in clinical trials and why. Of the 918 surveyed, 263 patients responded.

"Age, disease duration, use of oxygen therapy and disease presentation without chest pain were associated with trial participation, but the desire to help others with similar health problems was at the top of list," says Kinder, also director of the Interstitial Lung Disease Center at UC.

Results showed that 16 percent of LAM patient respondents participated in a clinical trial, but 85 percent of those people participated to help future patients.

In addition, results showed that the usual barriers to trial participation, like time constraints, risk of taking a placebo and geographic location, were found to be less important for LAM patients.

In a separate study, Kinder and colleagues found that it is cost-effective to do CT scan screening of non-smoking women, ages 25-54, who come to the emergency room for the first time with a collapsed lung--an early predictor of LAM--in order to diagnose and treat those with the illness.

"A major contributor to morbidity in patients with LAM is spontaneous pneumothorax, or a collapsed lung," Kinder says. "Seventy percent of patients with LAM will have at least one and most will have one or more recurrences. Due to lack of awareness and non-specific nature of most symptoms, the diagnosis of LAM is often delayed for several years into the disease.

"A CT scan for women of child-bearing age who experience a collapsed lung could help with a faster diagnosis, thereby improving outcomes."

Kinder says the results of these studies can help identify the disease in its early stages and find more effective treatments for patients with LAM.

"The more quickly we can detect the illness, the better chance a patient has of prolonging her life in addition to introducing the patient to novel therapies through clinical trials, which could help others as well," he says.
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University of Cincinnati Academic Health Center

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