The present study aimed to (a) examine the patient’s journey from the onset of symptoms to diagnosis and (b) explore the patients’ perspective of the journey until diagnosis, on the island of Crete in Greece. Our findings revealed major delays in the patient’s journey from the onset of symptoms to diagnosis because patients overlooked symptoms. Furthermore, through interviews and quantitative data, the major problems (physician missteps, administrative problems, and the effect of the Covid-19 pandemic) were revealed and elaborated upon by the patients, which delayed the diagnostic process. Interestingly, the present study was conducted in Crete, where primary healthcare facilities are well-developed (approximately 250–300 GPs for 630,000 people). However, only a handful of patients chose primary care facilities for their first visit, examination, and diagnosis of lung cancer (Fig. 3). It is important to highlight that Greece does not have an official lung cancer pathway. However, the ideal pathway for lung cancer patients begins by visiting primary care for diagnosis. From there, patients are referred to an oncologist who will evaluate their condition, develop a treatment plan, and provide necessary supportive care. The oncologist will also ensure proper follow-up for the patient.

A major finding of the present study was that respiratory symptoms (particularly coughing) and pain symptoms were the most common (Fig. 1) before the patient’s initial report to a physician. This finding is supported by other studies that examined the initial symptoms experienced by patients with lung cancer before seeking medical evaluation19,20,25,26,27. Primary care physicians should be vigilant, as pain is often overlooked when diagnosing lung cancer. Furthermore, our qualitative results revealed that the patients underestimated their initial symptoms until their cancer had already progressed to a more advanced stage. Remarkably, patient #34 said “Before the diagnosis I had a persistent cough for some time. I thought it was due to COPD, so I started taking antibiotics, antitussives, and inhalers on my own. Eventually, hemoptysis started. At that point, I visited the doctor”. Studies have shown that patients have fragmented knowledge about lung cancer symptoms and usually attribute them to other factors28,29,30, which delay them from seeking medical attention. In addition, patients could have appraised their symptoms based on previous experiences and/or knowledge and sought medical attention when they could no longer explain their symptoms31. Another interesting explanation could be that former or passive smokers underestimated the risk of lung cancer, which delayed them from seeking medical attention32. This explanation is also reinforced by patient #1, who said: “I had close to two years of coughing. I used to smoke and thought that’s why I coughed, towards the end I also had back pain. At first, I thought it was because of work. Eventually, I had to visit the Emergency Department”. These explanations underline the need for primary healthcare providers to better inform their patients about the risk factors for lung cancer and the value of prompt evaluation33.

Another major finding of our study was the illustration of a lung cancer patient’s journey from the first visit to a physician until diagnosis. We found several problems that delayed the process, such as multiple referrals, diagnostic missteps, administrative problems, and delays owing to the Covid-19 pandemic. Interestingly, a study has shown that Greece’s primary healthcare practitioners investigate lung cancer more often than other Balkan countries34. However, lung cancer is difficult to diagnose because it can have an atypical presentation30 and even a normal chest x-ray35, which can explain the multiple referrals. Another possible explanation for multiple referrals and diagnostic missteps could be the underuse of low-dose computed tomography in high-risk individuals for lung cancer screening by primary care physicians15,36. Nevertheless, a testimonial from patient #2: “I went to a bunch of doctors only in the end to be told that I have cancer. They even sent me to a plastic surgeon” illustrates the extent of the problem. Unfortunately, we could not find any study to explain the administrative problems; this means that more studies are required to further investigate such problems and propose solutions. However, it is worth mentioning that Greece has a national health system, there is also private healthcare, that is paid either with private contracts with the patients or directly with money out of pocket. Therefore, without a referral from a primary care physician can either pay specialists privately or they can visit the national health system without paying. However, it is known that the Greek national health system has faced many difficulties due to many years of austerity37. The Covid-19 pandemic probably amplified diagnostic missteps and administrative problems, as patient #32 reported: “Because of the covid, they kept canceling my test appointments. It took me 3 months to start treatment”. Moreover, studies confirm our findings, since major delays in the diagnostic process of multiple types of cancer were associated with the pandemic, such as colorectal, breast, and lung cancers38,39,40,41. Finally, these findings contradict the proposed optimal path for lung cancer patients through the healthcare system5. More specifically, the level of awareness in the patients of this study was low maybe because there was a lack of education in recognizing their symptoms early and seeking medical attention when the disease had irreversibly progressed. Additionally, healthcare professionals further delayed the diagnostic process through misdiagnosis, multiple referrals, and so on. These delays in our sample resulted in an average time of 1–3 months for the diagnosis of lung cancer (Fig. 5), which is much longer than the recommended 14 days (optimal time)13.

The findings of the present study suggest that a major change in the Greek and in similar healthcare systems is urgently needed to drastically reduce the time from the first visit to diagnosis, especially in primary care. Therefore, we propose a two-step solution to reduce the time required for diagnosis. First, healthcare authorities should educate healthcare professionals at all levels to recognize the symptoms of lung cancer42. Second, healthcare authorities should educate primary healthcare professionals to better inform patients/community members of the symptoms and risk factors associated with lung cancer. Toward this end, we produced two guidance booklets for healthcare providers and the general population, which were distributed by regional health authorities. Third, a Lung cancer pathway like the UK National Optimal Lung Cancer Pathway (NOLCP)43 and the NICE Faster Diagnosis Framework44 so that Greece could incorporate a national approach. Fourth, there is a pressing need to conduct implementational studies in Greece for lung cancer screening, in accordance with established guidelines. Such studies have the potential to significantly decrease the time taken for diagnosis and may also serve as a catalyst for political decisions regarding nationwide screening programs, which are currently unavailable in Greece45. Finally, there is a need for more research to help overcome the barriers to implementing low-dose computed tomography for lung cancer screening, such as false-positive tests, overdiagnosis, and the negative psychological impact of screening45.

To the best of our knowledge, this is the first study to examine and portray the journey of lung cancer patients from the onset of symptoms until diagnosis using a mixed methods study design. However, multiple problems were found, emphasizing the need to immediately redesign primary healthcare lung cancer diagnostic protocols. Additionally, our study had a few limitations inherent to the mixed-methods design. Recall bias may have affected the quantitative data, especially for the first symptoms, owing to an unknown time since diagnosis. For the qualitative data, we may have fallen into participant and/or researcher bias(es). Although, as explained in the “Methods” section, an educated and experienced interviewer reassured patients of their answers’ confidentiality to mitigate those bias(es). Finally, the present study was single-center and did not follow up on patients to ascertain how these delays affected their disease outcomes. To this end, multicenter longitudinal studies could better assess the outcomes of these delays.

In conclusion, the present study depicts the journey of patients with lung cancer from the onset of the disease to diagnosis through the healthcare system. Our findings clearly indicate areas that can be improved to reduce the time to diagnosis. Healthcare professionals and managers should utilize this knowledge to reexamine and optimize the way in which each level of healthcare operates. Additionally, physicians can better inform their patients and improve cooperation among specialties. In doing so, physicians should be able to diagnose lung cancer more quickly and improve the quality of life of their patients and the outcomes of the disease.