A study by Fundación MÁS QUE IDEAS and AEACaP highlights the psychological vulnerability of people diagnosed with lung cancer

• 3 out of 4 surveyed people with lung cancer were unaware of their risk of having the disease and did not recognize its symptoms.

• 31.5% of patients reported having or believing they had depression, and 37.7% were taking medication to manage emotional distress.

• 51.1% of patients admitted feeling guilty for having lung cancer, and 52.8% said they were affected by others’ attitudes upon learning about their illness.

• 1 in 3 surveyed people with lung cancer did not communicate, or barely communicated, how the disease was affecting them emotionally and physically to their healthcare team.

Madrid (April 22, 2025). The Spanish Association of People Affected by Lung Cancer (AEACaP) and Fundación MÁS QUE IDEAS presented today the report “Emotions and Experiences of People with Lung Cancer”, a social research project that analyses the emotional impact of lung cancer and identifies the main challenges in healthcare from the perspective of those affected by the disease in Spain.

The methodology consisted of an anonymous, self-completed online survey answered by 211 people diagnosed with lung cancer between September and December 2024. Among the key challenges identified were a lack of information about symptoms, vulnerability during the diagnostic process, and the need to improve psychosocial care and management of side effects, among others.

“This report highlights two key conclusions,” said Carlos Abanades, lung cancer patient and president of Fundación MÁS QUE IDEAS. He pointed out that “the widespread lack of public knowledge” about lung cancer symptoms “hinders early detection, and the severity of the psychological impact places those without access to psycho-oncological support in a particularly vulnerable situation.”

This initiative was supported by Roche and benefited from the voluntary collaboration of the Spanish Association of Social Work and Health (AETSyS), the Association for the Study of Lung Cancer in Women (ICAPEM), the Spanish Lung Cancer Group (GECP), the Spanish Society of Thoracic Surgery (SECT), the Spanish Oncology Nursing Society (SEEO), the Spanish Society of Family and Community Medicine (semFYC), the Spanish Society of Pulmonology and Thoracic Surgery (SEPAR), the Spanish Society of Radiation Oncology (SEOR), and the Spanish Society of Clinical and Health Psychology (SEPCyS).

Challenges in Diagnosis

Lung cancer is a disease that can affect anyone, with risk increasing through exposure to certain factors. In this regard, 93.2% of survey respondents reported having been exposed to risk factors associated with the disease, with tobacco use being the most cited (68.1%).

However, the report reveals concerning data that act as barriers to prevention and early diagnosis. On one hand, 73% of respondents were unaware of their risk of developing lung cancer. On the other hand, 78.2% reported insufficient knowledge about the disease’s symptoms before diagnosis.

Lack of symptom awareness and the tendency for lung cancer to manifest in advanced stages are two of the main reasons why nearly 80% of diagnoses occur at late stages. In response, 8 out of 10 patients surveyed believe that implementing screening programs is the most effective measure for achieving early diagnosis, followed by public education on lung cancer symptoms, mentioned by 41.1%.

“Educating society about the risk factors and symptoms of lung cancer is essential, because only through awareness can we advance in prevention and early detection,” said Bernard Gaspar, president of AEACaP. “We cannot continue diagnosing lung cancer at advanced stages most of the time,” Gaspar added, “as treatment options, survival, and overall well-being are significantly reduced.”

The time of diagnosis and the period leading up to treatment are moments of particular emotional vulnerability. According to surveyed lung cancer patients, the dominant emotion upon diagnosis was fear (63.3%), followed by uncertainty (58.1%) and sadness (51%). The main difficulties during this stage included uncertainty and lack of information about the process (56.7%), managing emotions (48.6%), and coping with loved ones’ reactions (43.8%). The emotional impact of the diagnosis was especially strong among those with advanced-stage disease.

“It’s precisely in the early moments of the diagnosis that we feel most confused and overwhelmed,” said Abanades, who emphasized that both patients and families “need support during this phase to find some peace amid the difficult journey they are facing.”

Emotional Health Challenges

The report also confirms the impact of lung cancer on the emotional well-being of those diagnosed. It reveals that 1 in 3 people were in a state of psychological vulnerability, either due to a clinical diagnosis of depression (17.3%) or a belief that they had this condition (14.2%). The survey data highlight the importance of integrating psychosocial and psychiatric support into the care pathway for lung cancer patients.

The psychological impact was so severe that 37.7% of surveyed patients said they had taken medication (e.g., anxiolytics) to reduce emotional distress, and 47.3% sought psychological help. Both forms of support were more frequently used by patients in advanced stages of the disease.

Laura Otón, psycho-oncologist and representative of the Spanish Society of Clinical and Health Psychology (SEPCyS), emphasized the need for “psycho-oncology to be fully integrated into the care journey of people with lung cancer.” She also stressed the importance of having psycho-oncology teams involved from the very beginning so that “patients and their families have someone to accompany them through the process in the best way possible.”

Living with lung cancer can trigger a range of emotional responses. Among these, and compared to other types of cancer, one emotion stands out: guilt. According to the survey, half of respondents felt guilty at some point during their illness (51.1%) or were affected in some way by others’ attitudes or comments (52.8%).

Challenges in Managing Side Effects

One of the biggest concerns for people with lung cancer is dealing with treatment side effects. The most commonly reported difficulty was fatigue (79.4%), followed by sleep disturbances (47.2%), digestive problems (46.7%), weight changes (46.2%), and skin issues (44.7%).

Addressing these issues requires, according to Diego Márquez, medical oncologist and representative of ICAPEM, “the creation of comprehensive thoracic tumor units that include specialists in supportive care, such as dermatology, psychology, and physical therapy, to support people with lung cancer.”

Despite the emotional and physical toll of the disease, the report reveals that 1 in 3 people with lung cancer did not communicate their concerns to their healthcare team, or did so only minimally. The main reasons cited were lack of time during consultations and lack of trust in the healthcare team.

“Today, patient associations and civil society organizations play a key role in supporting people affected by lung cancer and their families,” said Bernard Gaspar, who highlighted “the positive impact of being able to share questions, experiences, and emotions with others going through the same situation.”

 “Emotions and Experiences of People with Lung Cancer” Report

The report is publicly available and free to access or download in PDF format on the websites of AEACaP and Fundación MÁS QUE IDEAS.

Asociación de Afectados de Cáncer de Pulmón (AEACaP)

www.afectadoscancerdepulmon.com

Fundación MÁS QUE IDEAS

www.fundacionmasqueideas.org