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Disconnect exists between physician, patient views on responsibility for survivorship care
Poorly defined roles and miscommunication can lead to gaps, redundancies in care.
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Cancer survivors, oncologists and primary care physicians have divergent opinions as to who should be responsible for what when it comes to survivorship care, according to the results of survey published in The Journal of Clinical Oncology.
Researchers in the United States and Canada polled 535 patients treated at Dana-Farber Cancer Institute or Brigham and Women’s Cancer Center for a variety of cancers. All patients were two years removed from diagnosis and no longer undergoing treatment.
Patients were asked to describe on a five-point scale how much responsibility they expected their oncologist or primary care physician to have when it came to four key areas of survivorship: 1) surveillance of their most recent cancer, 2) screening for other cancers, 3) general preventive care and 4) management of other comorbidities.
At the same time, 378 oncologists and primary care physicians responded to a 10-question survey that asked them to describe responsibility for the same key areas on the same five point scale.
“All of this, for me, comes out of experiences in the clinic when I’d have patients ask me things like, ‘Is my thyroid medicine dose right?’ or ‘How’s my cholesterol?’” said Craig C. Earle, MD, an associate professor of medicine at Dana-Farber and a member of the study team. “I wasn’t doing any of that. I’m a GI oncologist — I was following them for their colon cancer. It got me thinking, ‘If they think I’m doing this and I don’t think I’m doing it, is anyone doing it? Or is care falling between the cracks?’”
Earle and colleagues wrote that, in general, patients expected their oncologists to be more involved in survivorship care than did oncologists. The biggest discrepancy in expectations was in the area of screening for other cancers. Almost 60% of patients said oncologists should be more involved in screening and 32% of those respondents ranked their expectations for screening two categories higher than the oncologists.
Patients also expected more from oncologists in terms of preventive care and management of comorbidities.
“What we found was that there were some potentially important disconnects in expectations,” Earle told HemOnc Today. “The biggest one was around screening for other cancers. You can see that if you’re a patient going to a cancer center and seeing a cancer doctor, presumably everything dealing with cancer will be taken care of there. But oncologists see screening as a primary care responsibility.”
The danger, Earle said, is not just that there could be potentially dangerous gaps in care, but also that invasive, time-consuming procedures and tests could be duplicated because the oncologist does not know what the primary care physician has ordered and vice-versa.
“It doesn’t actually matter who orders the mammogram, but we need to know that someone is doing it, and that that person knows it’s their job to do it,” Earle said. “It supports the idea of survivorship care planning that the Institute of Medicine recommended a few years ago.”
Survivorship plan
A survivorship care plan would operate like a discharge summary, with the oncologist detailing the patient’s treatment to date, any attendant complications and how follow-up treatment should proceed. The plan would ideally provide the primary care physician with a roadmap for survivorship care.
“The goal for the survivorship care plan is to actually put on paper what needs to be done. That way you at least define the roles of the different clinicians. Whether the patient goes primarily to the primary care physician or the oncologist, at least everybody in the picture knows what needs to be done and who will get it done,” said Larissa Nekhlyudov, MD, MPH, an assistant professor of medicine at Harvard Medical School and a general internist at Harvard Vanguard Medical Associates. She wrote an accompanying editorial to the study. “Unfortunately, nothing like that is done in oncology at the moment. There are a couple of centers across the country that have begun formulating these survivorship plans, but it certainly has not been adopted by the oncology world.”
Currently, a patient is often entirely responsible for communications between physicians, Nekhlyudov said. Although she agreed that patients should have an ownership stake in their treatment, patients should not have to shoulder the weight. Physicians need to reach a consensus defining who is responsible for specific aspects of survivorship care, she added.
“Somebody in the oncology world does need to take charge of making sure that these survivorship plans are done, in one way or another,” she said. “The patient can certainly keep a copy of the plan and pass it on to the primary care physician. Patients need to take some responsibility, but I think we shouldn’t dismiss the responsibility of the oncologist and the primary care clinician.”
Nekhlyudov expects survivorship planning to expand in the coming years as the idea gains traction and the use of electronic medical records makes it easier for physicians to share information.
“Cancer survivorship is really an emerging field. Twenty years ago, we never thought of cancer survivorship as a field,” she said. “The goal was treating cancer. Now that we are treating cancer and the number of survivors is growing, we really need to consider, carefully, the field of survivorship and test different models of care. There’s lots of ongoing research trying to find models of care that might be best.” – by Jason Harris
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