Nearly nine years after the Institute of Medicine recommended that cancer patients completing primary treatment receive a survivorship care plan, only about five percent of oncologists are actually providing them. That is the conclusion of a study now available online ahead of print in the Journal of Clinical Oncology ( doi: 10.1200/JCO.2013.51.7540).
There are currently about 14 million cancer survivors in the United States, and that number will continue to rise with improved survival rates and an aging population.
The study, funded by the National Cancer Institute and the American Cancer Society, used data from the 2009 Survey of Physicians' Attitudes Regarding the Care of Cancer Survivors (SPARCCS), which was completed by 1,130 oncologists and 1,020 primary care physicians practicing general internal medicine, family medicine, and obstetrics-gynecology. First author is Danielle Blanch-Hartigan, PhD, MPH, a Cancer Prevention Fellow in NCI's Office of Cancer Survivorship.
The results showed that:
- 64 percent of oncologists said they always or almost always discussed survivorship care recommendations with survivors;
- Only 32 percent of oncologists discussed with survivors who they should see for cancer-related or other follow-up care;
- Less than five percent of oncologists provided survivorship care plans to their patients;
- Only 12 percent of primary care physicians regularly discussed survivorship care recommendations or provider responsibility with survivors;
- Most (95%) oncologists who reported receiving detailed training about late and long-term effects of cancer provided survivors with written survivorship care plans and discussed survivorship care planning; and
- Those primary care physicians receiving survivorship care plans from oncologists were nine times more likely to discuss survivorship issues with survivors.
Released in 2005, the IOM report, “From Cancer Patient to Cancer Survivor: Lost in Transition,” recommended that oncologists—in addition to providing survivorship care plans including a written treatment summary and individualized follow-up plan—also discuss with patients recommendations about their care and which medical providers should be responsible for overseeing their cancer-related and other medical follow-up (http://bit.ly/1m5obLj; OT 12/10/05 issue).
The authors of the JCO study also noted that a 2012 study of 53 NCI-designated cancer centers reported that only 43 percent of the centers implemented survivorship care plans for their cancer survivors.
However, with seemingly few carrots so far to prod compliance, a stick instituted by the American College of Surgeons Commission on Cancer (CoC)—requiring that by 2015 institutions seeking accreditation provide written survivorship care plans to survivors completing treatment—should help move the initiative along.
Patricia A. Ganz, MD, Professor of Health Policy and Management in the Fielding School of Public Health; Professor of Medicine in the David Geffen School of Medicine at UCLA; and Director of the Center for Cancer Prevention & Control Research at the Jonsson Comprehensive Cancer Center, was co-senior author of the new study with Julia H. Rowland, PhD, Director of NCI's Office of Cancer Survivorship. Both were also involved in designing the original SPARCCS survey.
During a telephone interview, Ganz, a medical oncologist specializing in breast cancer, said that it often takes 10 to 15 years to implement anything in medical practice, and that she expected the CoC requirement to “move the needle.”
Ganz, a member of the IOM committee that issued the 2005 report, has discussed these issues with OT many times over the years, including in 2006 on promulgating survivorship plans to oncologists (OT 7/25/06 issue) and in 2009, discussing the status then of several survivorship care plans (OT 3/10/09 issue).
So far there has been no penalty for not providing survivorship information or care plans to survivors, and part of the communication problem between oncologists and primary care physicians may stem from limited contact at the time of referral, Ganz noted.
“Most new cancer patients are referred to medical oncologists from surgeons or other specialists rather than primary care providers, and if doctors are not in the same system [or haven't had access to electronic health records] then oncologists don't always know who the primary care physician is.”
Survivors want information about how they can take care of themselves, she said, stressing the importance of the plans and treatment summaries to patients as they navigate their way through post-cancer treatment as well as to their primary care physicians, who will be better prepared and more confident when dealing with survivorship issues.
Questioning Oncologists about Appropriate Follow-up Care
Blanch-Hartigan said in a separate interview that the study found that oncologists who reported they did not provide written survivorship care plans also reported that they had patients requesting more aggressive follow-up than was being recommended.
Cautioning that the cross-sectional nature of the study often made it difficult to distinguish the direction of certain relationships, she said that if patients had more written information about their treatment and follow-up in the first place they might not be questioning oncologists about what they believed to be appropriate follow-up care.
Ganz said that communications does not need to be standardized but should just be simple communications from oncologists as well as oncology nurses and other members of the oncology care team to patients and primary care physicians.
Better collaborative care is needed and might help reduce the “tremendous overutilization of visits to oncology specialists,” who are also facing a workforce shortage in the near future, Ganz said.
Better communication, and coordination and co-management of care will also help benefit the many cancer survivors who are older and may have other medical conditions as well.
Blanch-Hartigan said the study indicated the need for increased training about late and long-term effects of cancer for both oncologists and primary care physicians: “What is most significant is that as new mandates [regarding survivorship plans and follow-up care] are put in place, we have to ensure that they are implemented in a meaningful way that includes involving survivors in discussions.”
She also noted that NCI currently has a funding opportunity for researchers interested in examining survivorship care planning efficacy and impact—available at http://1.usa.gov/1nBSHff.
The specific quality of conversations oncologists have with patients about survivorship were not part of the study. “We don't know if these have been truly patient-centered discussions that also address patients' emotional needs,” Blanch-Hartigan said, adding that she is now involved in a qualitative study that addresses what is being discussed and how it is discussed, and that next steps should also include evaluating survivorship care planning's effect on outcomes.
Winson Y. Cheung, MD, MPH, a medical oncologist specializing in gastrointestinal cancer at the British Columbia Cancer Agency in Vancouver, provided an accompanying podcast for JCO on the report (www.jco.org/podcasts).
He explained during a telephone interview that he had been a reviewer of the JCO paper and was asked to present a synopsis and his point of view of the study. In the podcast he said that most research to date has focused on patient-centered outcomes such as short-term satisfaction or knowledge levels, and there has been very little looking at factors influencing physician behavior and coordination of care for survivors.
This new study is one of the first to identify the socioeconomic factors associated with survivorship care patterns, such as physician training and care coordination—although the conclusions are more confirmatory in nature than completely novel.
One question the study did not answer, Cheung said, was how best to provide physicians with survivorship education so that they can be more comfortable with the subject. Considering that there are financial constraints, he proposed exploring innovative approaches to enhancing education such as incorporating mobile devices, tablets, and other technological advances to streamline post-care discussion and provide survivorship care.
He said another important finding was the observed association between better care coordination and better survivorship care—underscored by the nearly 10 times increase in primary care physicians discussing survivorship issues with patients after receiving a survivorship care plan from an oncologist.
The obvious next step, he said, would be to develop clinical trials to effectively test and validate the hypothesis that improved care coordination and enhanced physician survivorship training will increase the frequency of survivorship discussions and use of care plans.
“I personally look forward to the results of these clinical trials,” he said, adding that doctors need evidence to be convinced, and he would also like to see fellowship programs in survivorship training.© 2014 by Lippincott Williams & Wilkins, Inc.
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