Tool helps challenge the stigma of lung cancer

For many individuals diagnosed with lung cancer, this is the first question they are asked.

People may not think twice about this inquiry.

The American Lung Association estimates that 80 to 90 percent of lung cancer deaths are caused by smoking, and successful tobacco-control efforts have emphasized this link.

However, for those affected by this devastating illness, the question is an example of a larger stigma that may have wide-ranging negative consequences, including reduced research funding.

Lung cancer is the leading cause of cancer death for both women and men in the United States.

However, according to data from the Lung Cancer Alliance, estimated research spending from the National Institutes of Health in 2016 equated to $1,479 for each lung cancer death, compared with $19,250 for each breast cancer death.

We are trying to understand lung cancer stigma and test strategies to reduce its harmful effects on patients, families and health-care providers.

Through in-depth interviews with lung cancer patients, we learned about their experiences with guilt, shame and self-blame.

In collaboration with colleagues from University of Texas Southwestern Medical Center and Memorial Sloan Kettering Cancer Center, we have developed a measurement tool to better understand the type and degree of stigma faced by lung cancer patients.

This tool helps us investigate stigma’s impact on psychosocial outcomes, illness disclosure, patient-provider communication, adherence to treatment and engagement in clinical trials.

We have participated in large-scale, collaborative studies to understand societal perceptions and biases against lung cancer.

Discoveries from these studies and collaboration with other UA colleagues help us develop and test interventions for patients and health-care providers to reduce stigma and improve the lives of individuals affected by lung cancer.