Survivorship Guidelines Present Challenges in Primary Care

In an ideal world, standardized survivorship guidelines would facilitate coordinated care between oncology and primary care, but in the real world, gaps exist and current guidelines clash, according to Linda Overholser, MD, MPH, Associate Professor, Division of General Internal Medicine, University of Colorado Denver School of Medicine. She discussed her experience using guidelines related to cancer follow-­up care at the 2018 Cancer Survivorship Symposium.

Most cancer survivors follow up in primary care settings over time, but communication between primary care providers (PCPs) and specialists remains problematic, and survivorship guidelines are lacking.

A recent study showed that PCPs seek to address these knowledge gaps.1 The study also revealed the need for guidelines to clarify provider roles when working as a multidisciplinary team.

Appropriate Communication with Primary Care Physicians

Survivorship care is not just about surveillance for disease recurrence. According to Dr Overholser, the current guidelines used in oncology settings do not sufficiently address comorbidities, preventive care, and other important issues for cancer survivors.

A 2017 qualitative study noted a lack of “actionable” guidance as a barrier to survivorship care in advanced primary care practices.2

“We need survivorship guidelines, and we need to make primary care providers aware of them,” Dr Overholser said. “But we’re seeing these patients in our practice, whether we have guidelines or not.”

But uniform guidelines are also lacking in primary care. Multiple guidelines exist for breast cancer screening alone, and these guidelines change over time, often leaving providers wondering which ones to follow.

“It comes down to somewhat of a difference in perspective and culture,” she said. Guidelines from oncology organizations focus on higher-risk populations, such as radiation therapy, late side effects, and hereditary risks, and individuals who are receiving or have received treatment for cancer. However, these organizations may not be as well known to PCPs as primary care organizations, which typically focus on the asymptomatic general population and services provided in the primary care setting, not specifically on cancer survivors.

For example, for long-term childhood cancer survivors who received chest radiation therapy, Children’s Oncology Group (COG) guidelines suggest checking a lipid panel every 2 years, whereas the American College of Cardiology/American Heart Association guidelines recommend a baseline lipid panel at age 20 years, and again every 4 to 6 years.

“So if you didn’t know about the COG guidelines, would that put your patients at risk?” she posited.

“Suffice it to say that among these organizations, there’s no universal consensus on what recommendation is being made,” she said.

Efforts have been made by the American Society of Clinical Oncology and by the American Cancer Society to make their guidelines widely available to PCPs. “So this is where we really need to combine the availability of guidelines with our clinical experience and judgment.”

Additional Challenges in Primary Care

Adding to the challenges for PCPs is the fact that many guidelines have been developed with a specific disease focus, but survivorship care applies to a heterogeneous cancer population.

“As far as an evidence base, a lot of what we know has been carried out in the more prevalent cancers, ie, breast, colon, and prostate,” she said. “So even within the cancer survivorship realm, there’s a wide range of guidelines to follow.”

Yet another challenge for PCPs is the issue of multimorbidity. Approximately 25% of the general population has more than 1 chronic health condition, and that number will increase as the population ages. A 2016 study showed that an individual with ≥3 chronic conditions takes an average of 6 to 13 medications daily and visits a healthcare provider 1.2 to 5.9 times monthly.3 A striking feature of this study is that it did not include cancer as a chronic condition.

“So now that we’re thinking about cancer as a chronic condition, we can only expect to see these numbers increase,” Dr Overholser said. “This is a huge fact of life we have to face, and if the research doesn’t allow for thinking about comorbidities, it’s going to be challenging to try to apply guidelines in real-world practice.”

Better Survivorship Guidelines Needed

According to Dr Overholser, the need to provide “high-value care,” avoid unnecessary testing, and decrease healthcare costs should influence guideline development in the future.

“These factors will be driving practice change and will be a tremendous source of pressure in primary care,” she said. “We need to be thinking about the benefits and harms of anything we recommend for patients, keeping in mind that one of the main toxicities is financial.”

Going forward, high-level evidence from randomized controlled trials should inform guidelines by defining risk categories and populations, verifying the impact of certain interventions on morbidity and mortality, and determining whether available recommendations for risk reduction translate to survivor populations.

“We also need clarity in recommendations. It’s helpful to include what to do, but I think it’s equally important to know what not to do,” Dr Overholser said.

Although guidelines in survivorship care are helpful, they should not take the place of clinical judgment and real-world experience. “The fact that we’re talking about guidelines speaks to the successes of cancer treatment, and to the fact that we’re seeing a lot more survivors,” she pointed out. “But we still need to apply these recommendations to the individual sitting in front of us.”


  1. Dossett LA, Hudson JN, Morris AM, et al. The primary care provider (PCP)-cancer specialist relationship: a systematic review and mixed-methods meta-synthesis. CA Cancer J Clin. 2017;67:156-169.
  2. Rubinstein EB, Miller WL, Hudson SV, et al. Cancer survivorship care in advanced primary care practices: a qualitative study of challenges and opportunities. JAMA Intern Med. 2017;177:1726-1732.
  3. Buffel du Vaure C, Ravaud P, Baron G, et al. Potential workload in applying clinical practice guidelines for patients with chronic conditions and multimorbidity: a systematic analysis. BMJ Open. 2016;6:e010119.

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