Table 4 Themes and participant quotes in the in the diagnostic interval

Barriers

Health system challenges

“I was told before a pulmonologist would see me, I needed a chest X-ray, and I needed a pulmonary function test…I remember being really irritated and I blew it off because I was like I don’t have time for that…all I was imagining was all these appointments I had to schedule.” (Patient #12, 44-year-old female, Stage IV, Never smoking history)

“I don’t think [never smokers] get scanned as much or images much, rather CT or chest X-ray… also [for] the current low dose CT screening scans, Medicare will only pay for them if you have a history of smoking.” (Provider #7, Cardiothoracic surgery)

“They saw these different signs in my lungs, and I was terrified… and I kept contacting them and they were very patient with me. They were able to get [me in] for a lung biopsy.” (Patient #2, 71-year-old female, Stage IVA, 10–20 pack-year former smoking history, quit 25 years prior to diagnosis)

“Primary care doctors are trained to say ‘hey let’s triage this…’ and not just scan everybody all the time. I feel like if a patient gets to the [emergency room] (ER), they’re almost guaranteed to [get a] scan.” (Provider #2, Gynecologic oncology)^a

“I had some difficulty when I laid on my right side…I couldn’t breathe as well, so I asked my doctor about it. He sent me to a lung specialist…And the lung specialist did some breathing tests… where you breathe in in a little chamber and…they test your oxygen intake …He also did a lung X-ray and he found nothing. Uhm, which of course we know that lung cancer can’t be found on an X-ray anyway.” (Patient #3, 66-year-old female, Stage IIIB, Never smoking history)

“[A primary care provider] is worried about the whole body…and there are also time constraints…They have what, 15 min per visit? That slight shortness of breath that you get while walking up the hill probably is going to be lower on the totem pole than the knee pain that you’re having.” (Provider #7, Cardiothoracic surgery)

Social determinants of health

“It gets a little dicey in the first month or two of each year when I have to pay the (insurance) out of pocket down” (Patient #6, 60-year-old male, Stage IV, Never smoking history)

“We find that [for] patients…that are maybe hours from a major university hospital just getting their care and getting the appropriate testing takes longer. ” (Provider #8, Cardiothoracic surgery)

“…Socioeconomic status [and] education [are] all variables that indicate an individual’s ability to obtain a diagnosis in a timely fashion. Along with that, would be social support, [the] ability to take off work, or obtain childcare to go to your healthcare appointment, I think it’s trust in the system. In this case, distrust, especially with regards to racial and ethnic variations in trust in the healthcare system.” (Provider #13, Gastroenterology)

Facilitators

Severe symptoms and known risk factors

“She said, ‘<<patient name > > I believe it’s just the lisinopril (side effect of medication). But because you smoked for 40 years, we’re going to send you for a chest X-ray, just in case.’ And so, I went to get the chest X-ray… <<provider name > > called me the next day. She told me that I had a tumor.” (Patient #9, 66-year-old female, Stage IIIA, 40 pack-year former smoking history, quit 5.5 years prior to diagnosis)

“Hemoptysis is the is the firm answer that says it’s probably lung cancer and it’s probably really bad.” (Provider #11, Lung oncology)

“I have had a few patients I was worried [about]…and fortunately they ended up not having lung cancer, but the first thing for me would be risk factors, if they have a history of smoking and then that combined with cough and weight loss then I would say I’m worried about you and we need to work that up.” (Provider #5, Neurology)

“Nonsmokers get diagnosed in a much more advanced stage than smokers because our index of suspicion is higher [for smoked]…” (Provider #12, Lung oncology)

Self-advocacy

“I had my annual physical…and my doctor said that I had blood in my urine. And I said, you told me this the last couple years. Could we check this a little further? I said I want to know what’s going on. He goes well, sometimes there’s a little blood in urine like that. It’s not a big deal…so this time I said let’s check a little further and look into it.” (Patient #3, 66-year-old female, Stage IIB, Never smoking history)

“They’re like, ‘I had to advocate for myself because I kept having symptoms and nobody would scan me and so we see that a lot of people are like I was short of breath…I had chest discomfort. I was losing weight and then finally somebody decided to scan me.’” (Provider #2, Gynecologic oncology)

“I was having some discomfort in my right sternum and back under my shoulder blade. And I kept mentioning it…[a provider] called me the next day and told me that she pulled previous films…and she said that that’s where she noticed the lesion.” (Patient #5, 81-year-old male, Stage IIB, 30 pack-year former smoking history, quit 14 years prior to diagnosis)

“I think if a patient continues to seek help and not give up because they didn’t get help, that may lead to, hopefully, a sooner diagnosis” (Provider #4, Gastroenterology)

“I went to the doctor for my physical and I said, the only thing I worry about at this point is cancer…I was pushing her…I knew the right things to say to get her to say OK. ‘OK,’ she said. ‘We’ll do a test. We’ll do an MRI…CAT scan,’ I don’t know what it was. And then, as she’s looking at my chart, she says ‘ …as long as we’re doing that, let’s do the chest X-ray.” (Patient #10, 77-year-old female, 6 pack-year former smoking history, unknown years since quitting)