London – A new report highlights significant gaps in patient information and involvement in treatment decisions for people impacted by oncogene-driven lung cancers in Europe.
The Empowering Voices: Knowledge and Decision-Making Among People Impacted by Lung Cancer in Europe report, conducted by Lung Cancer Europe (LuCE) with the support of 40 member organisations, features data from 1,078 participants with oncogene-driven lung cancers such as ALK, EGFR, KRAS, PD-L1, and ROS1.
The key findings reveal a communication crisis, with numerous alarming gaps in patient understanding and engagement. Only 1 in 4 participants reported having a very good level of knowledge about their disease, and around 25% had difficulty understanding the information they received. Additionally, 40-50% of participants felt dissatisfied with their level of involvement in shared decision-making, with complex medical information identified as the primary barrier to meaningful participation in treatment decisions.
Yvonne Diaz, Co-founder and Chair of Oncogene Cancer Research, a member of the report working group, emphasized the importance of clear and understandable information for patients. “As someone living with stage 4 lung cancer, I know first-hand how critical it is to receive information that’s not just accurate, but understandable. Our healthcare system needs to speak to patients, not at them. That means better communication, more time with clinicians, and resources that reflect our real questions, fears, and hopes,” she said.
The study also highlighted challenges during the diagnostic phase, with more than 1 in 3 participants reporting insufficient information about their diagnostic pathway. Between 37% and 56% of respondents across different oncogene-driven groups reported inadequate access to healthcare teams during these crucial early stages.
Despite these challenges, the study found nearly universal agreement (98% of respondents) that their opinions should be considered in treatment decision-making. However, the reality falls short of this expectation, with only 50-70% of participants feeling their treatment aligned with their personal preferences.
Jan Clark, Co-founder & Secretary of Oncogene Cancer Research and mother to a daughter diagnosed with stage 4 ALK+ lung cancer at the age of 20, emphasized the importance of clear communication in these life-changing situations. “When your young adult child or loved one is facing a life-changing cancer diagnosis, clear communication isn’t just important, it’s everything. The fact that nearly half of families aren’t getting the information they need to make informed decisions together is unacceptable,” she said.
The report calls for urgent recommendations for healthcare providers to provide complete, clear, and comprehensive information tailored to individual preferences and needs, develop communication strategies that actively support shared decision-making, allocate adequate consultation time for meaningful patient-provider dialogue, and simplify complex medical information without compromising accuracy.
The study surveyed 1,078 participants affected by oncogene-driven lung cancers across the WHO European Region between May and July 2024. The research represents 52.7% of total participants in the broader 9th LuCE Report and provides crucial insights into the experiences of people living with these oncogene-driven cancers.
About Oncogene Cancer Research
Oncogene Cancer Research’s mission is to extend both the length and quality of life for people living with oncogene-driven lung cancers. The organization accelerates research by funding promising projects, advocating from trial design through to access, and pushing for more clinical trials to open in the UK. They also empower patients and caregivers with knowledge and resources to support informed decision-making and champion advocacy to ensure the patient voice is heard at every level of care. For more information, please visit their website at www.oncogeneresearch.org.
About Lung Cancer Europe (LuCE)
Lung Cancer Europe (LuCE) is a not-for-profit umbrella organization established in 2013 to provide a platform for lung cancer patient advocacy associations at a European level. Their vision is that all Europeans impacted by or at risk of lung cancer will have access to optimal care so that they have the best possible outcomes and quality of life. The organization collaborates with members and other stakeholders to destigmatize the disease and ensure that those impacted by lung cancer get the care they need to achieve the best possible outcomes. They also empower members to ensure strong and effective lung cancer patient advocacy across Europe.
For any media queries or other requests, please contact Oncogene Cancer Research at admin@oncogeneresearch.org.
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