Patient-centered care must account for uncertainty, anxiety during active surveillance
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Although patients undergoing active surveillance for low-risk cancers generally have a favorable prognosis, oncologists should take steps to manage any anxiety and helplessness patients may be experiencing, according to a viewpoint paper.
In the paper, David A. Haggstrom, MD, MAS, and colleagues noted active surveillance is a potential strategy for several types of cancer, including localized prostate cancer, papillary thyroid cancer, lobular breast cancer in situ and indolent hematologic malignancies.
In these cases, patients undergo regular monitoring to determine whether further evaluation, biopsy or treatment are necessary.
In the paper, Haggstrom and colleagues outlined approaches to managing patient anxiety associated with active surveillance. These strategies include cognitive behavioral therapy, acceptance and commitment therapy, mindfulness meditation, patient decision aids and clinician decision aids.
“It is always appropriate to identify and explore patient concerns while patients are undergoing active surveillance to understand the patient experience in terms of anxiety,” Haggstrom, a physician-researcher at Regenstrief Institute, Veterans Administration Medical Center in Indianapolis and Indiana University School of Medicine, told Healio. “We don’t have a lot of evidence-based interventions to guide how to monitor patients for anxiety. That would be an area for future research.”
Healio spoke with Haggstrom about the need for clear discussions about active surveillance at the time of diagnosis, as well as how oncologists can follow patients undergoing active surveillance to identify — and help — those who are experiencing anxiety.
Healio: Active surveillance has been increasingly used for low-risk cancers. What is the value in this approach?
Haggstrom: Certain diagnoses of indolent malignancies are unlikely to progress or cause a patient harm during their lifetime. Nonetheless, a cancer has been diagnosed, and a plan needs to be crafted to address the patient’s health needs. Active surveillance typically is proposed as an option where the benefits of treatment could be outweighed by the treatment’s risks, side effects or complications. For low-risk cancers, active surveillance may be a reasonable or even a good choice. Even among these cancer types, there is a small risk for progression, or for the cancer to become more serious. That’s where the surveillance component becomes applicable. For this reason, patients undergoing active surveillance commonly receive tests to ensure the cancer is not progressing.
Healio: How can active surveillance contribute to patients’ anxiety?
Haggstrom: After receiving a cancer diagnosis, the idea of being less proactive — even in cases where the consensus is that the potential benefits of active treatment are outweighed by the potential harms — leaves patients with uncertainty. Uncertainty on the part of the patient can lead to feelings of anxiety, or a constellation of what some call aversive behaviors. This can consist of feelings of fear, vulnerability and avoidance of future decisions — even decisions related to the surveillance itself. Once a patient receives a diagnosis, I encourage physicians and health care providers to think about the effects these diagnoses and approaches have on patients, and consider tools to help them manage uncertainty or any potential anxiety.
Healio: How should clinicians approach this?
Haggstrom: We outline at least two main categories of approaches to help patients managing the anxiety or “scanxiety” associated with long-term surveillance. Those approaches include tools from clinical psychology, such as acceptance and commitment therapy, or cognitive behavioral therapy. Meditation has been explored in some small studies, such as for prostate cancer, and it has been effective in helping some individuals manage the uncertainty that may come along with the cancer diagnosis and undergoing active surveillance.
At the time of diagnosis, and when making the decision to pursue active surveillance, it’s important to share information with the patient about the very small risk they face and the potential benefits of active surveillance. It’s also important for providers to understand these trade-offs. Providers — primary care or otherwise — may not be fully informed about these choices so, to best care for their patients, provider decision aids in this space may be useful as well.
Healio: What are your next steps in research?
Haggstrom: We are interested in following patients over time to understand how their experiences with uncertainty or other patient-centered concerns may change. With active surveillance, we are talking about very long periods of time — years, or even decades. In addition to understanding the natural history of a patient’s experience after a cancer diagnosis, we should also consider interventions, and testing those in trials to understand if there are tools we should be investing in or offering to our patients during the course of their cancer journey.
Healio: Is there anything else you’d like to mention?
Haggstrom: After we make these diagnoses and patients are faced with a good prognosis, we as physicians should not lose sight of the fact that patients may still be experiencing negative consequences around that diagnosis. We have both an ethical and a clinical responsibility to deliver patient-centered care and address patient concerns.
References:
- Haggstrom DA, et al. JAMA Oncol. 2024;doi:10.1001/jamaoncol.2024.2667.
- Regenstrief Institute. Waiting is the hardest part: medical field should address uncertainty for cancer patients under active surveillance (press release). Available at: https://www.eurekalert.org/news-releases/1058040. Published Sept. 16, 2024. Accessed Nov. 13, 2024.
For more information:
David A. Haggstrom, MD, MAS, can be reached at dahaggst@iu.edu.
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