Incredible advancements in lung cancer research and treatment have been reported during the 2023 World Conference on Lung Cancer, but the stigma surrounding lung cancer remains a deadly problem, according to Jill Feldman, a lung cancer patient and Chair of IASLC’s Patient Advocates Committee.
“There’s an undeniable blame culture in lung cancer that you just don’t see with other cancers,” she said. “Every other cancer elicits empathy and responses such as, ‘I am so sorry, what can I do to help?’ But for most of us living with lung cancer, the first question we’re asked is, ‘Did you smoke?’”
Ms. Feldman was diagnosed with stage IA lung cancer in 2009, but her experience with lung cancer stigma goes back 40 years. When she was 13, she lost two grandparents to lung cancer within weeks of their diagnoses and within weeks of each other. Six months later, her father was diagnosed with lung cancer and died within three months at age 41.
During her presentation on Sunday, September 10, Ms. Feldman described an interaction with a friend at a baseball game not long after her father died. When this friend observed that Ms. Feldman was “never in a good mood anymore,” she reminded her friend that she had recently lost her father. Her friend responded: “Well, my mom said it was your dad’s fault because he was a smoker.”
“Needless to say, the emotional scars and impact that I experienced at 13 years old stay with me today, and I continued to experience that stigma when my mom and my aunt died [of lung cancer] when I was in my twenties,” Ms. Feldman recalled. “And since my own diagnosis, I continue to experience that stigma. I have learned how to handle it, but to watch my kids go through what I went through is heart-wrenching.”
To combat lung cancer stigma, the IASLC published the IASLC Language Guide in 2021. The guide details preferred language and phrasing for all oral and written communications, including presentations at IASLC conferences.
Ms. Feldman and a group of researchers wanted to measure the impact the guide was having, so they analyzed 519 presentations from WCLC 2022 in Vienna and found 177 presentations that referenced smoking status. Of those 177 presentations, 77 (43%) used non-stigmatizing language, while the other 100 used the stigmatizing term “smoker,” she reported.
Ms. Feldman characterized this a positive development since the language guide was published only a year before the meeting. She also noted that the journal Tobacco Control recently changed its policy to highlight the importance of non-stigmatizing language and to avoid labeling people by their smoking status. Furthermore, the National Comprehensive Cancer Network cited the IASLC Language Guide in its recent language guidance, she said.
“This is a significant and pivotal endorsement. It should be a game-changer,” said Ms. Feldman, noting the NCCN’s influential role as a primary resource for clinicians and insurance companies in determining patient care pathways.
Despite this progress, research into the ramifications of lung cancer stigma is lacking, according to Nathan Harrison, a behavioral scientist and PhD student from Flinders University and the Flinders Health and Medical Research Institute in Adelaide, Australia. Mr. Harrison presented results from a study designed to identify and synthesize existing interventions to combat the stigma associated with lung cancer and smoking-related respiratory diseases, including chronic obstructive pulmonary disease (COPD).
Mr. Harrison and his research colleagues conducted a systematic review of four electronic databases (PsycINFO, CINAHL, PubMed, and Scopus) focusing on lung cancer, COPD, and stigma-related terms, for relevant records published up to December 2022. Eligible studies described an intervention designed to reduce externalized or internalized stigma and were assessed using critical appraisal tools as appropriate for the varied (case report, qualitative, quasi-experimental, and randomized controlled trial) study designs.
The researchers identified 10 studies describing nine stigma-reducing interventions from 427 records. Most interventions focused on guiding behavior change through group programs, providing formal psychotherapeutic intervention, or offering information/instruction and reference materials to individuals. The interventions primarily targeted symptomatic individuals or higher-risk groups in high-income countries, he reported.
“We need to further develop and evaluate stigma-reducing interventions with larger samples in diverse socio-cultural contexts,” Mr. Harrison said. “Additionally, including validated stigma assessments in a wider variety of interventional studies could help identify more effective techniques for targeted stigma reduction.”