Adult Cancer Survivors Discuss Follow-up in Primary Care: ‘Not What I Want, But Maybe What I Need’

Shawna V. Hudson; Suzanne M. Miller; Jennifer Hemler; Jeanne M. Ferrante; Jennifer Lyle; Kevin C. Oeffinger; Robert S. DiPaola

doi:10.1370/afm.1379

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Table 1

Demographic Characteristics of Participating Survivors (N = 42)

	Cancer Centers (n = 23)		Community Hospitals (n = 19)		Total (N=42)

Characteristic	Mean No.	% or Range	Mean No.	% or Range	Mean No.	% or Range
Race/ethnicity^a
White	19	83	10	53	29	69
Black	2	9	9	47	11	26
Asian	1	4	–	–	1	2
Latino	1	4	–	–	1	2
Age, y	64.5	47–80	64.5	49–77	64.5	47–80
<65	11	48	10	53	21	50
≥65	12	52	9	47	21	50
Education^b
Less than high school	1	4	1	5	2	5
High school, some college	11	48	11	58	22	52
College or more	11	48	6	32	17	41
Marital status (married or cohabiting)	18	78	13	79	33	78
Currently employed (yes)	13	57	8	42	21	50
Household income^b
<$20,000	1	4	3	16	4	10
$20,000–$59,000	6	26	7	37	13	31
$60,000–$99,000	6	26	4	21	10	24
≥$100,000	7	30	5	26	12	29
Cancer type
Breast	13	57	11	58	24	57
Prostate	10	43	8	42	18	43
Years from active treatment
2–5	8	35	6	32	14	33
6–9	7	30	8	42	15	36
≥10	8	35	5	26	13	31
Self-rating of health
Excellent or very good	12	42	9	41	20	48
Good	10	44	5	26	15	36
Fair or poor	1	4	6	31	7	17

↵a χ²=8.948, df=3, P=.030.
↵b Because of nonresponse, percentages do not add to 100%.

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Table 2

Participating Cancer Survivors’ Perceptions of Which Physician Should Monitor Follow-up

Theme^a	Illustrative Quotes
Cancer specialist only n=22, 52%	“If there’s anything, considering anything, in reference to cancer treatment, I would see my oncologist for it. [J]ust because that’s their specialty…I’d rather see the oncologist, someone that is familiar, who does it every day. I just wouldn’t think that a primary or my gynecologist would know, be as knowledgeable” (PS 36). “You gotta have an oncologist. I would advise anyone not to go to a family doctor or a general practitioner, you gotta be an oncologist. You know, I’m a firm believer. My head hurts, I’m going to the head doctor. My foot hurts, I’m going to the foot doctor” (PS 34).
Shared care: cancer or cancer-related specialist and primary care physician n=16, 38%	“I mean, as far as being a liaison between me and that oncologist or me and the surgeon, that’s what my primary care is for, in my opinion. That’s how I used him, to be my go-between. To explain the things in the files that I didn’t understand” (PS 7). “Um, maybe ob-gyn [could be involved in follow-up]…. When I go there yearly for the clinical exam, they’ll usually question about the breast cancer and stuff like that” (PS 12). “I think all of them [primary care physician, urologist and oncologist] should be concerned with the [follow-up] care. [Knowing my] history is OK…, too. But they should be involved together because…primary care knows more about…me other than the cancer” (PS 13).
Does not matter n=1, 2%	“I don’t think that makes a difference really…. [S]omebody would have to be trained specifically in an ancillary part of the adjustment process, you know. It would have to be—to be of any value, it would have to be specific to that, and I’m not sure that’s even possible” (PS 4).

PS=participating survivor.
↵a Because of nonresponse (n = 3, 7%), percentages do not add to 100%.

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Table 3

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).
Expectation of care continuity with doctors n=24, 57%	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.

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Table 4

Preferences for Primary Care Physician–Led Follow-up Cancer Care

Theme	Subtheme	Illustrative Quotes
Order routine tests for cancer follow-up n=26, 62%	Keeping track of screenings	“Primary doctor—she keeps an eye, also, on my PSA. And if—and I always ask her how’s the PSA. And tells me it’s fine, and she gives me the readings. And I’m sure if it elevates in any way, she would tell me so” (PS 18). “[My primary care physician is involved in cancer follow-up] As far as paperwork. In other words, I request certain papers sent to him, or certain examinations be sent to him” (PS 17).
Order routine tests for cancer follow-up n=26, 62%	Screening for late- term effects of treatment	“[My primary care physician] does do something for cancer follow-up. He does those EKG’s…because I had the radiation or the chemo…. Well, the last time that I was there he sent me for a stress test because I had the chemotherapy and the radiation. He told me that. Because it’s going to affect my heart…. He does it about twice a year” (PS 6). “I was having a lot of backache, and being that I had the cancer background, [my primary care physician] sent me for an MRI and everything. And they usually make sure I have my bone density scan and stuff like that” (PS 51).
Provide secondary or supple- mental care n=16, 38%	Primary care physicians could be a part of follow- up team	“So, it’s almost like you need a primary with this survivorship plan in hand that’s been viewed and had input from all of your other doctors. Here’s the roadmap, and the primary care is going to help guide you along that line” (PS 14). “I mean, I kind of space them out so that I’m seeing a doctor every 6 months…. I see my primary care doctor for my physical and then I’m off 6 months for the [cancer center]…. So that way I feel like I’m being watchful, at a 6-month time frame. Then I go see the gynecologist like 3 months later” (PS 5).
Provide secondary or supple- mental care n=16, 38%	Primary care physicians are first- stop doctors or gatekeepers	“My primary care…gets my blood work. Now, if something’s wrong with my blood work, then I would go to a specialist” (PS 10). “If there’s a concern…if it’s out of the norm, I go see my primary care physician right away. She is quite diligent so I trust her. …[I]f something were to come up, [my urologic surgeon] would still be there hopefully or somebody in his place that you know I can go to and the records would still be available” (PS 2). “You know, as far as [my obstetrician-gynecologist] examining me [for follow-up care], because examining the breast is part of what he does, I mean it’s possible that he could detect something between my visits [to the oncologist]. And, uhh, you know, in that case [it is fine, but] just to go to him for the [follow-up] treatment of the cancer, no” (PS 9).
When enough time has passed n=9, 21%	During an extended survivorship period	“Well, basically, at the point I’m at now, [transitioning to a primary care physician] would probably be fine. Because I’m more comfortable with it now and I kind of have a feeling that…this is gonna be 5 years in November and after that period of time, your other doctor is quite familiar with it” (PS 19). “After I had talked to the surgeon, and they told me like, uh, there was really nothing they could do for me, that the rest was up to myself, you know, I felt like, hey, if they…if I’m in that state, and I have no PSA level that’s showable, then I could ask to go to my family doctor and let him just keep a check on the PSA levels” (PS 16).
When enough time has passed n=9, 21%	When reintegrated into noncancer population	“Once I’m not taking any medications [laughter] I don’t think I need to go to see someone specifically, so I don’t know whether at that point it would even be considered follow-up care…” (PS 1). “Well, as Dr Z. [urologic surgeon] explained, [I need follow-up for] 20 years…I might, uh, when I get my physical every year, include a PSA, and when [my primary care physician] gets the information, rather than go away to [cancer center], you know, if he gets the results, and if he’s satisfied or if he’s not satisfied, I’ll call, then I’ll get in touch with Dr Z. again” (PS 34).

EKG=electrocardiogram; MRA=magnetic resonance imaging; PS=participating survivor; PSA=prostate-specific antigen.

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Supplemental data: Appendix - PDF file, 7 pages, 242KB
The Article in Brief

Shawna V. Hudson , and colleagues

Background Primary care clinicians have an important role in follow-up care for cancer survivors. This study explores patient preferences about the role of primary care physicians in extended cancer follow-up care.

What This Study Found Many cancer survivors have concerns about seeing their primary care physician for cancer-related follow-up care and prefer receiving follow-up care from their cancer specialists. They describe the following barriers to follow-up care from their primary care physician: (1) lack of cancer expertise, (2) limited or no involvement with original cancer care, and (3) lack of care continuity. In this study, one-third of participants believe there is a role for primary care clinicians in cancer follow-up care, including: (1) performing routine preventive screening tests, (2) supplementing cancer-related specialist care, and (3) providing follow-up medical care when "enough time had passed" or the survivors feel they can reintegrate into the non-cancer population.

Implications

The authors call for primary care to engage meaningfully in the case management of adult cancer survivors.
The authors also suggest that specialists educate and discharge their patients with a better understanding of what cancer follow-up care is, its lifelong duration, and the potential for varying degrees of monitoring, as well as the role of the primary care physician.