2024-02-05 07:47:49
A study on biomarkers by AEACaP and the MORE THAN IDEAS Foundation shows delays and lack of information regarding the molecular diagnosis of lung cancer, with more than half of the people with this tumor not knowing how to interpret or understand the diagnosis.
X-ray of lung cancer/Courtesy photo
The report ‘Biomarkers: experience and knowledge of people with lung cancer’is a social research project for which various patients with lung cancer in Spain have been asked about your experience with diagnosis and biomarker testing.
The study, prepared by the Spanish Association of Lung Cancer Patients (AEACaP) and the MORE QUE IDEAS Foundationrecently presented, highlights the lack of information and the high difficulties and barriers in the diagnosis process, as well as the delays and lack of information.
To carry out this, an online and anonymous survey was launched, finally completed by 148 people diagnosed with lung cancer between April and May 2023. Of all of them, 63.5% were women. Particularly noteworthy are people between 45 and 54 years old, who constituted 65.5% of the total number of respondents and the highest participation occurred in Madrid, Catalonia and Andalusia.
He report is part of the global initiative From Testing to Targeted Treatments (FT3) to improve access to precision medicine.
Has mainly the objectives: on the one hand, explore the degree of ignorance of people with lung cancer regarding the diagnosis and biomarkers and try to alleviate it, and on the other hand, analyze the experiences of patients during the diagnosis process.
What is a biomarker?
A biomarker is a substance used as indicator of a certain biological state. Therefore, biomarkers are used to detect diseases, pathologies or their processes.
Biomarkers are generally substances that enter the body as a means to measure the function performed by a specific organ or other aspects of the patient’s health. For example, the existence of a antibody concrete may indicate a specific infection.
Concretely, a biomarker reflects a change in the manifestation or state of a protein related to the possible progression of a disease, or the resistance of a disease to a certain treatment.
From left From right: José Luis González Larriba, head of the Thoracic, Urological and Melanoma Tumors Unit of the San Carlos Clinical Hospital in Madrid and member of the Board of Directors of the Spanish Lung Cancer Group; Diego Villalón García, member of the MORE QUE IDEAS Foundation); Mª Ángeles Marín Rodríguez, Lung cancer patient; Bernard Gaspar Martínez, President of the Spanish Association of Lung Cancer Patients; Mª Dolores Lozano Escario Head of the Pathological Anatomy Service of the University Clinic of Navarra. Elected president of the Spanish Society of Pathological Anatomy; Vincent Raske, Program Manager, The Synergist.
Main findings of the study
The information is insufficient
The moment of receiving the news and the period between diagnosis and the start of treatment are the most difficult moments emotionally for people with lung cancer.
Although more than half of the people claim to be satisfied with the information they receive, a significant group of participants is not satisfied with the information received and maintain that there are comprehension difficulties.
The information received during the diagnosis can be improved for one in three people. Furthermore, more than half of the people surveyed, specifically 58.2%, acknowledge that they have difficulties understanding the diagnosis.
Among people who say they have experienced difficulties, the main obstacle noted is the short time to process the news and understand the information.
Lack of information and low knowledge about biomarkers
One in three people say they have not received this information from their doctor. However, a large majority (90.3%) indicate having heard of biomarkers at some point.
The main source of information is the medical and health personnel (55.4%), closely followed by associations of patients and civil organizations (46,9 %).
Only half of people (52.7%) claim to have been informed about biomarkers and molecular diagnosis by their medical teams. In this way, we observe that 69.6% have sought information on biomarkers on their own initiative.
Delays in Biomarker Testing
The process that entails longer delay is the one that covers from taking the sample to receiving the results. 57.4% of participants had to wait more than two weeks.
Many biomarker tests are outsourced to other hospital centers.
22.8% of the patients went to another center to perform the biopsy and 43.6% stated that their sample was analyzed at another hospital center.
Most biopsies are of tumor tissue
Only 21.8% of participants have undergone a liquid biopsya new technique that allows blood to be analyzed and detect DNA remains from cancer cells.
In this way, we obtain information about molecular alterations of tumors and is useful for non-invasive monitoring of patients throughout their treatment.
Main challenges for the diagnosis of lung cancer. Infographic provided.
Lack of information and understanding about the goals and results of biomarker testing
19% of participants affirm not having received information from their medical team about the purpose of biomarker testing, and 9% say they are not sure if they received it.
Biomarker testing is very important
87.1% consider it important know the results of biomarker tests and yet, only 63% acknowledge having understood the results of these tests well. This information is essential for effective participation of people in making decisions about their treatment.
High interest in having more information about biomarkers and precision medicine
69.6% have sought information about biomarkers on their own initiative and nine out of ten want to know more about biomarkers and precision medicine.
Infrastructure and technology in hospitals: challenges for diagnosis
People with lung cancer surveyed consider that the main challenge is lack of infrastructure and technology in Spanish hospitals (67.2%), followed by the lack of public financing.
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