Then and Now: Awareness is Greater, But Stigma Remains High in Lung Cancer

Stigma associated with lung cancer diagnoses remains a major challenge, according to the findings of a national survey conducted by Lung Cancer Alliance.

Patients with the disease reported increased feelings of stigmatization, and results also showed that patients are viewed or treated differently than those with other cancer types.

A positive finding of the survey: lung cancer awareness has improved over the past 10 years.

“We were happy to see the increase in public awareness,” Jennifer C. King, Ph.D., director of science and research with Lung Cancer Alliance and lead author of the study, told CURE.

“We knew that stigma remained. Initially, we were surprised to see the increase that was reported by the patient population. The data suggests that the patients are feeling it more acutely,” she added. “We believe this is linked to the increased awareness and understanding and self-advocacy around their lung cancer. The community actively recognizes that society is often treating them differently. ”

The survey was initially administered in 2008. This summer, the 2008 survey was replicated with an additional 3-11 new questions about stigma. It was completed by phone or online by more than 1,400 people, including the public, patients with lung cancer and oncologists who treat the disease.

Survey findings showed that perceptions have changed over the past decade, but not all for the better. From 2008 to 2018, the general patient recognition of stigma increased from 54 percent to 70 percent, respectively. Sixty-three percent felt patients with lung cancer are treated differently by society compared with 45 percent in 2008. A quarter of people surveyed felt loved ones would be more supportive of them if they had a different type of cancer.

In addition, more than half of surveyed patients said that acquaintances or strangers said or did things that they felt was blaming them for the disease; 29 percent felt the same was done by family or friends.

In addition, oncologists noticed an increase in the number of patients who blame themselves for their diagnoses (57 percent versus 67 percent) in the 2018 survey. And although there is stigma associated with lung cancer, oncologists felt there is less stigma for people who have the disease and never smoked.

Overall, general awareness about lung cancer has improved. Ninety-four percent of the public surveyed are familiar with the disease and noted that the media are telling more stories about it. The use of advocacy organizations significantly increased from just 18 percent in 2008 to 39 percent in 2018.

“Groups are more sophisticated now,” King said. “We have grown tremendously and have a much higher reach. And today, communication and social media make it easier for people to access advocacy groups.”

A brighter outlook was also seen in treatment and medical care advances with 52 percent of oncologists feeling they had adequate options to help patients live longer. Patients also felt greater satisfaction with care (87 percent) and treatment options (71 percent).

“Now that we have this data, it’s time as a community — the awareness is higher, the self-advocacy is higher, the use of advocacy groups is higher — to go out and actively address stigma,” King said.

Lung Cancer Alliance hopes to put out new programs in 2019 and 2020, including some that will focus on empathetic communication to patients with lung cancer. In addition, more data from the survey will be analyzed, such as smoking status, age and gender, in the coming year.

“No one deserves to die no matter what type of lung cancer they have, no matter what their risk factors were,” King said. “It’s a cancer like any other and anyone who is diagnosed deserves compassion and access to the best care possible.”