Oncogene Cancer Research Calls For Urgent Reforms In Lung Cancer Communication And Shared Decision-Making Following Major European Survey

2025-06-10 03:10:52

(MENAFN- Pressat)

4 in 10 people with oncogene-driven lung cancer in Europe say they don't get the info they need to manage their disease
Only 1 in 4 respondents surveyed understand their diagnosis and treatment options
98% of patients and caregivers want a voice in their care decisions, but only half get it
Patients and caregivers say doctors use language too complex to understand during consultations

10 June 2025, LONDON – Oncogene Cancer Research today highlights a report examining the experiences of over 1,000 people impacted by oncogene-driven lung cancers across Europe revealing significant gaps in patient information and involvement in treatment decisions.

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 highlight 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
Around 25% of respondents had difficulty understanding the information they received
40-50% of participants felt dissatisfied with their level of involvement in shared decision-making
Complex medical information was identified as the primary barrier to meaningful participation in treatment decisions

Diagnostic journey reveals systemic issues

The research 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.

Participants specifically identified their greatest informational needs as:

Clinical trials access and eligibility
Side effects management and expectations
Nutritional and exercise guidance
Psychological counselling support

Patients and care partners want greater involvement despite barriers

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.

Call for healthcare system reform

The report issues urgent recommendations for healthcare providers:

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

Simplify complex medical information without compromising accuracy

You can find the full LuCE report here .

About the research

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. We accelerate research by funding promising projects, advocating from trial design through to access, and pushing for more clinical trials to open in the UK. We empower patients and caregivers with knowledge and resources to support informed decision-making. And we champion advocacy to ensure the patient voice is heard at every level of care. Find out more at: .

About Lung Cancer Europe (LuCE)

Lung Cancer Europe (LuCE) is a not-for-profit umbrella organisation established in 2013 to provide a platform for lung cancer patient advocacy associations at a European level. Our 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. We collaborate with members and other stakeholders to destigmatise the disease and ensure that those impacted by lung cancer get the care they need to achieve the best possible outcomes. We empower members to ensure strong and effective lung cancer patient advocacy across Europe.

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