Lung Cancer Europe Study Highlights Communication Gaps and Need for Shared Decision-Making

Complex Medical Language Cited as Main Barrier to Communication and Understanding of Lung Cancer Diagnosis

(Barcelona, Spain September 9, 2025, 10:15 a.m. CEST / UTC +2) — A large-scale survey conducted by Lung Cancer Europe (LuCE) has identified critical communication barriers that affect information access, understanding, and shared decision-making among lung cancer patients and caregivers across Europe.

The research was reported at the International Association for the Study of Lung Cancer 2025 World Conference on Lung Cancer (WCLC).

The study, based on 2,040 valid survey responses from 34 WHO European Region countries in 20 languages, evaluated three key areas: general knowledge about lung cancer, access to information, and involvement in decision-making. The findings underscore the need for healthcare systems to improve communication practices and patient engagement to ensure more person-centered care.

Lung Cancer Europe (LuCE) is a nonprofit, patient-led organization that serves as the umbrella group for lung cancer advocacy organizations across Europe.

“Patients need information that is understandable, timely, and supports meaningful participation in their care,” said Debra Montague of LuCE, the presenting author. “Despite best intentions, current systems often fall short of empowering patients and caregivers to make informed decisions.”

Montague reported that 65% of participants delayed seeking care due to unrecognized symptoms and 22% were unaware of biomarkers, while 24% did not understand their prognosis.

She added that 40% said they did not receive enough information and 29% did not fully understand what they received.

“Patients told us that common barriers included information processing (39%), lack of clarity (33%), and complexity (33%),” she said. “Surprisingly, only 56% felt their opinion was considered in treatment decisions while 60% felt the care plan matched patient preferences.”  

Montague reported that the top obstacle to shared decision-making was complex medical language (49%).

The majority of respondents (64%) valued both quality and length of life equally, though about one-third prioritized quality over quantity of life, underscoring the need for personalized care discussions.

Montague said she encourages healthcare providers, policymakers, and advocacy groups to collaborate to improve early diagnosis, enhance communication, and prioritize shared decision-making.  

“Health providers must enable and implement shared decision-making to help enhance quality of life. Improved communication strategies are critical to deliver person-centered care,” Montague said.

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About the IASLC:
The International Association for the Study of Lung Cancer (IASLC) is the only global organization dedicated solely to the study of lung cancer and other thoracic malignancies. Founded in 1974, the association's membership includes more than 10,000 lung cancer specialists across all disciplines in over 100 countries, forming a global network working together to conquer lung and thoracic cancers worldwide. The association also publishes the Journal of Thoracic Oncology, the primary educational and informational publication for topics relevant to the prevention, detection, diagnosis, and treatment of all thoracic malignancies. Visit www.iaslc.org for more information.

About the WCLC:
The WCLC is the world’s largest meeting dedicated to lung cancer and other thoracic malignancies, attracting nearly 7,000 researchers, physicians, and specialists from more than 100 countries. The goal is to increase awareness, collaboration and understanding of lung cancer, and to help participants implement the latest developments across the globe. The conference will cover a wide range of disciplines and unveil several research studies and clinical trial results. For more information, visit https://wclc.iaslc.org/.