Lung Cancer Europe (LuCE) has launched its 7 th LuCE Report: Challenges in the care pathway and preferences of people with lung cancer in Europe
Long wait-times and lack of information: Main challenges in the care pathway, according to people with lung cancer in Europe
- Significant delays were reported from the first signs of lung cancer to the diagnosis of the disease. 84% of participants suggested the fast tracking of services as the highest priority measure to improve the diagnostic pathway experience.
- The implementation of Lung Cancer Screening programmes was identified as the most helpful measure to obtain an earlier diagnosis of the disease (64%).
- Only 53% of participants confirmed that they had received and understood all of the information they needed before consenting to their treatment.
December 1st, 2022 – Lung Cancer Europe (LuCE) has launched the 7th edition of the LuCE Report. This is an annual initiative led by lung cancer patient organisations, across Europe with the purpose of raising awareness relating to the main challenges faced by people impacted by this disease.
The report titled `Challenges in the care pathway and preferences of people with lung cancer in Europe´, has explored the experiences and recommendations of people diagnosed with lung cancer from disease presentation to diagnosis, to treatment and follow-up. Data was collected through a self-filled online survey, completed by 991 people diagnosed with lung cancer in the WHO European Region.
Anne-Marie Baird, President of LuCE commented: “The aim of this report was to identify barriers and areas of improvement to enhance the lung cancer care pathway. Even with differences in the structure and delivery of care across Europe, the findings of this report stress the need for person-centered models that develops and improves partnerships between individuals and their healthcare providers. It also highlights the continual need for improvement in both the access and delivery of care for people impacted by lung cancer.”
FairLife L.C.C., as an active member of LuCE, undertook this year to communicate in Greece the 7th survey of the European body. With this report, LuCE once again becomes a genuine communication channel, which records and publicizes the views of those who have been touched by lung cancer, throughout the course of the disease. “LuCE’s lung cancer patient-centered approach aligns perfectly with FairLife’s mission. We are honored, through this research, to contribute to the work of LuCE, representing lung cancer patients in Greece. The effort to beat lung cancer is a team effort!” highlighted Korina Pateli-Bell, President of FairLife L.C.C.
RESULTS
A selection of headline findings from the LuCE Report include:
Diagnostic pathway
- The majority of participants surveyed (84%) prioritised the need for the fast tracking of services to reduce waiting times, followed by providing a point of contact within their healthcare team (73%) and offering a roadmap about the diagnostic process (72%).
- Long wait-times in the lung cancer diagnostic pathway is a top challenge across Europe. A substantial number of participants waited for more than one month to contact their doctor from when they experienced first symptoms (40%), to get a primary healthcare appointment (20%), to attend a lung specialist (27.3%) and to receive a diagnosis since first consultation with a specialist (28.2%).
- Rapid diagnostic pathways would shorten this stressful period of time, however, according to survey participants, the measure that would help the most to obtain an earlier diagnosis of lung cancer is to implement screening programmes (64%).
About the lung cancer screening, Anne Marie Baird explained: “The implementation of Low Dose CT (LDCT) screening is the best option to deliver a stage shift in the diagnosis of this disease. It can save the lives of many of our loved ones through earlier diagnosis and should be implemented as a matter of priority within European countries.”
Treatment pathway
- Complete and understandable information is needed for shared decision-making. However, participants reported a lack of information prior to treatment, especially when receiving pharmacotherapy: 47% of participants did not receive or understand all the information they required for appropriate shared decision making.
- Information about treatment options available (79%), advantages and disadvantages of each option (74%) and potential side effects and risks (70%) were reported as the most important issues in treatment decision making. Participants also suggested the use of common words (56%) and the value of having a conversation with a specialist (51%) to better understand medical information.
- Access to multidisciplinary and high-quality integrated care is essential for dealing with the difficulties associated with lung cancer. However, 35% recognized that their overall needs were not addressed enough by their healthcare teams. The main priorities reported was to improve the support for side effect management (especially pain management), more information and guidance about clinical trials (48%) and emotional and social issues (40%)
- Communication between people with lung cancer and healthcare professionals is crucial for quality supportive care along the disease pathway. However, half of participants (49%) did not share all aspects of their health status with their healthcare team. The following measures were suggested to improve the communication process: access to specialised cancer nurse consultation (44%), longer medical consultation (44%) and having a central point of contact (44%).
Finally, Anne Marie Baird also commented that: “People with lung cancer need complete, comprehensive and understandable information to enable shared decision making. Good communication with the clinical team is critical and much improvement is needed to establish shared decision making in the real world setting.”
REPORT The full report and the executive summary are accessible here: www.lungcancereurope.eu
Download Reports : 7th LuCE Report -Full report-English
7th LuCE Report-Executive-Summary-Greek
Lung Cancer Europe (LuCE) is a not-for-profit umbrella organization established in 2013 to provide a platform for lung cancer patient advocacy associations and networks at a European level. Our vision is that all Europeans (patients, families and caregivers) impacted by lung cancer will have equity in access to optimal care so that they have the best possible outcomes and quality of life. LuCE collaborates with members and other stakeholders to destigmatise the disease and ensure that those impacted 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.