Table 4.

Indicative quotes: disruption and uncertainty in accessing clinical care.

Participant	Indicative quote
Patient, F 51–70, sarcoma, United States	One of the strong recommendations for people with sarcoma is that you get seen at a high-volume center that does a lot of sarcoma treatment. And, because of COVID, I was not able to do that… [State]’s laws prohibited me from doing telemedicine with them, so I was stuck with my doctors talking to them and translating what they said to me as opposed to me being able to talk with them and ask them the kind of questions I would normally ask to get comfortable with whatever treatment that I am engaging in.
Patient, M 51–70, brain cancer, Australia	I was on the dendritic cell vaccine thing from 2015 to 2018, one injection a month. 2019, I had it every second month. […] And then in 2020, because of COVID [and travel restrictions], I only got two injections… So, effectively, in 2020 the cancer's come, I'm suggesting, I don't know, cancer's come back. It's been detected in March ‘21. And obviously, from now, in March ‘21, well, we're doing it every month.
Husband, M 30–50, rare cancer, Australia	We just said, “What about the trial?” and he goes, “They were all put on hold.” He said, “I went to them and they got put on hold.” I think 90% of trials just got stopped.
Patient, F 51–70, breast cancer, United States (a)	So, I mean, for us, we have to travel. So normally we would have flown down, like just catch a cheap Southwest flight. It's only about an hour. But, (a) we didn't want to be on anybody's airplane for even an hour even with masks on, (b) the rental car, I don't know how clean that is… it's like 5 hours [to drive].
Patient, M >70, head and neck cancer, United States	I have it in writing, from both my doctors that I am not to take the vaccine. None of them at this point in time, which is of course putting somewhat of a crimp on my life. Reason being, we have contacted Pfizer. We've contacted Moderna. We've contacted Bristol-Myers Squibb and nobody can tell us if there will be any sort of interaction between the Optivo and any of the vaccines that are out there right now. We have no information whatsoever from the horse's mouth… I would be willing to mask the rest of my life until somebody does a study somewhere that says, you know, with Optivo you can take one of the vaccines… But nobody knows and it's scary when you talk to people at Pfizer and Moderna and they say, “we don't know, we can't tell you, there's been no studies done.”
Patient, F 30–50, lung cancer, Australia	So, those people on the forum talked more… some of them came back with zero antibodies, some of them come back with some low number of antibodies… And so they started to get worried, and so I started to get worried. And so yesterday I had a follow-up with [oncologist] and I did ask him whether I can do a blood test to check my antibodies. He said, “None of that is available in Australia yet unfortunately.” He said that there's possibly not enough evidence to say that that is okay. So he said, “Just take the precautions.”
Patient, F 51–70, breast cancer, United States (a)	I was trying everything to get the vaccine. And so how things have been rolled out is horrible. And I only got mine because my church partnered with the hospital and I knew the person running the health ministry. And I said, “Well if at the end of the clinic, it's coming to the end of day you feel like there's extra, let me know.” So we rushed and drove down and that is how we got our vaccine. Other than that, you know you are at risk and there is no way to get this vaccine. So communicating to patients proactively would be good because that caused me a lot of stress.