Participating Cancer Survivors’ Perceived Barriers to Primary Care Physicians Providing Follow-up Care
| Theme | Subthemes | Illustrative Quotes |
|---|---|---|
| Values and goals: primary care physicians are not experts in cancer follow-up n=33, 79% | Primary care physicians are not knowledgeable about cancer or follow-up care | “They do not have the training to deal with it. The experience, the training, the know-how. Just, I just don’t think it’s acceptable. Even if you live out in a rural area where there’s no oncologist available, I would think that you would make sure that wherever you had your treatment, you go back there once or twice a year” (PS 21). “I think [survivors] should be seeing doctors that are oncologists.… Because that’s what they deal with all the time. A general surgeon, a general practitioner, might be staring at it right in the face and for whatever reason not realize what it is, especially if it’s an early-stage onset….” (PS 4). |
| Survivors want “the best” specialty care they can get | “I love my family doctor. But he is…he’s a…board certified internist, I guess is the correct term; and he’s a great doctor.… I’m not a…I don’t know how to quite phrase this, if I owned a Ferrari I wouldn’t take it to the local mechanic to have fixed” (PS 26). “I want to go to the best. I’m not saying [my primary care physician] wasn’t good. But I’m going to go to the best” (PS 70). | |
| Expectation of care continuity with doctors n=24, 57% | Original treatment team knows patient’s history | “Dr. X knows what he did—the surgery. He kind of shared with me that he did something…a little different with me than he normally does to preserve as much of the urethra as possible. So, you know, because he knows what he did, I would prefer having him for follow-up for the prostate cancer” (PS 2). “To me, what happened to me was ideal. I had the same…I had the same doctor…you know, basically confirmed the diagnosis, recommended treatment, carried out the treatment…. So, ideally if you can deal with one physician all the way through the process, you form a bond” (PS 26). |
| Survivors form personal bonds with their original oncologists | “Yeah, sure I connected with [my oncologist] pretty well because we are about the same age, and she has kids in the same school system where my son is. So it was nice, and she was a working mom, and I’m a working mom, so she definitely connected, or made an effort definitely to connect with me on that level” (PS 5) “At one point about a year ago, I thought I was at the once-every-6-months stage, and she said, ‘Do you mind if we still keep it at 4 months? Because I’ll miss you if you don’t come as often.’ And I just hugged her because it really made me feel that, ‘Yep, you’re not a number. You really do mean something’” (PS 3). | |
| Beliefs about care: primary care physicians are not engaged in cancer care n=19, 43% | Primary care physicians ignore cancer- related issues or relegate questions to oncologists | “I feel I always have to tell the primary that I’m a breast cancer patient. Just to put into context, you know, in case I have to consider other things that could be the reason for what my symptoms are. But they don’t ever invoke that. It’s always me bringing that forward” (PS 31). “[M]y primary care physician just asks me how I’m doing, but I guess he’s assuming that I’m just, you know, visiting these other doctors. I don’t think his specialty is in [cancer follow-up]” (PS 15). “I don’t think your primary’s really ever good for your cancer follow-up, because my primary doesn’t do breast exams. Um, he leaves it up to my oncologist. So basically, any oncology issues that I think are oncology, I would call my oncologist, not my primary” (PS 37). |
| Survivors are torn about when to use primary care physician or oncologist | “I recall having an incident where I had like a lump…between my throat and my shoulder blade…. I went to the oncologist, and they felt that I should have gone to my primary for that. But I think when I feel a lump, my first reaction is, could that be cancer?” (PS 38). “[T]his sarcoma started on the outside of the other breast. Which nobody had a clue about.… I did see my primary for that, and she did not know what it was. She didn’t have a clue, and she really did not help me with that. When I look back, I really feel like she should have said, ‘You need to see your oncologist.’ She didn’t, and I didn’t, right away, until it got worse. And it got worse, and I knew something was really, really wrong, and then I went to [cancer center]” (PS 23). |
PS=participating survivor.