Despite Gains, Stigma Remains a Problem; Survivors Continue to Shoulder Blame for Diagnosis

Wednesday, September 5, 2018 – Survey results released today by Lung Cancer Alliance (LCA) show that general awareness about lung cancer has improved significantly over the last decade with 94 percent of the public reporting familiarity with lung cancer. Despite this change in overall perspective, findings also indicate that lung cancer stigma remains a significant problem with an increased belief that lung cancer patients are viewed or treated differently than other cancer patients and patients reporting increased feelings of stigmatization.

Conducted by Lung Cancer Alliance (LCA) and sponsored by AstraZeneca, the national survey, which was first done in 2008, tracked the perspectives of patients, oncologists and the general public on lung cancer. The original survey was replicated to determine whether perceptions have changed over the last decade. The results will be formally unveiled on September 25, 2018 in Toronto, Canada at the IASLC 19th World Conference on Lung Cancer hosted by the International Association for the Study of Lung Cancer.

Even as lung cancer awareness and visibility trend upward, stigma continues to impact how patients view their own lung cancer journey. The survey found increases in perspectives about stigma across many fronts from 2008 to 2018 including general patient recognition of stigma (54% vs. 70%), a feeling that lung cancer patients are treated differently by society (45% vs. 63%) and a belief that loved ones would be more supportive of them if they had a different type of cancer (11% vs. 25%). In addition, oncologists surveyed in 2018 believe there is a stigma associated with lung cancer (68%) although more felt stigma was lower for never-smokers. From 2008 to 2018, more oncologists noted that patients blame themselves for their diagnoses (57% vs. 67%).

“The good news is that this survey shows what we have suspected for some time – lung cancer awareness has increased significantly across many channels over the last decade,” said Jennifer C. King, PhD, Director of Science and Research with Lung Cancer Alliance and lead author of the study. “However, we recognize the challenges we still face as our community becomes more aware of the role that stigma plays in their lives. This understanding better positions us to proactively work towards meaningful solutions for patients while bringing greater awareness to this aspect of the lung cancer experience.”

Additional findings include:

  • Media Are Telling More Stories About Lung Cancer. Every segment – public (65%), patients (78%) and oncologists (85%) reported increased media visibility for lung cancer
  • Advocacy Organizations Are More of a Lifeline for Patients. Patients reported significantly increased use of advocacy organizations (18% vs 39%,)
  • Treatment Advances Continue to Improve Outlook for Oncologists and Patients.
    • Significantly more oncologists reported having adequate treatment options to prolong patients’ lives (31% vs 52%)
    • The majority of patients reported satisfaction with medical care (87%) and treatment options (71%).

Follow LCA during the World Conference on Lung Cancer (WCLC) on social media using the hashtag #WCLC2018.

For additional information on stigma, visit our website.


About the Survey:

The survey was conducted by Russell Research on behalf of Lung Cancer Alliance sponsored by AstraZeneca. In 2008, a large survey of patients, oncologists and the general public revealed that most participants felt lung cancer was principally caused by external factors, was preventable and lung cancer patients were at least partly to blame for their illness. This survey was replicated to understand whether perceptions have changed over the last decade.

A total of 1001 members of the general public, 208 lung cancer patients, and 205 oncologists who treat lung cancer patients were surveyed with the same questions from 2008 plus 3-11 new questions about stigma. The survey was administered by phone and online during summer 2018.