LuCE study identifies key communication barriers between lung cancer patients and caregivers

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. Despite best intentions, current systems often fall short of empowering patients and caregivers to make informed decisions."

Debra Montague of LuCE, the presenting author

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.