An Inside Look at the Cancer Experience Registry and Its Findings on Anxiety in the Patient Population

When examining data on the experience of patients with cancer, experts at the Cancer Support Community (CSC) found the available information to be lacking, particularly around the true patient experience beyond the physical impact of cancer and its treatment.

To better capture patients’ attitudes, beliefs, and behaviors, CSC created the Cancer Experience Registry, a unique online community that allows those facing cancer the ability to share their experience, access resources, and learn from each other.

In an interview with CURE®, Heather Badt, Executive Director of the Research & Training Institute at Cancer Support Community, explained how the registry works and went into detail about some of the higher level findings of the 2020 Cancer Experience Registry Report, specifically those in the area of anxiety as it’s experienced by patients and their caregivers.

Transcription:

The cancer experience registry is an online research survey for patients and caregivers going through the cancer experience. It collects information about the impact of the cancer, including direct and indirect costs of care, of transportation, etc. It could be a communication with your health care team, also, importantly, quality of life and on unmet needs. Participants would answer multiple choice questions as well as a few open-ended short questions.

The 2020 Cancer Experience Registry report that came out that you referenced is our third release, and it contains high-level findings, and the report is made up of several sections.

In our general registry component, it's open to all cancer patients and captures a wide variety of issues the patient's face, regardless of the nature of their disease. There's also a caregiver registry. And that's a separate set of questions that focuses on the unique needs that would impact anyone that's a family member or an informal caregiver to someone living with cancer.

We also have a third component, which are 12 different specialty registries. They look at the unique experiences that a patient might have, and that particular disease type. An example could be prostate cancer, breast cancer, or ovarian cancer.

There's a lot of information in the registry, and one of the areas that I wanted to share that I thought were really exciting and relevant to this conversation was relative to anxiety. So, 49% of our registry participants were at risk for clinically significant anxiety, and four out of 10 were at risk for clinically significant depression.

Similarly, I referenced the caregiver registry a few moments ago, caregivers reported anxiety at levels that are substantially worse than the national average at 49%. That's important because while some new clinical guidelines do talk about standards that patients are required for screening, some are looked at from a comprehensive perspective and some are not. And so, by not providing this comprehensive psychosocial distress screening, looking at depression and anxiety, it means the care team could really be missing a lot of critical components to a patient's well-being, and have an outfit impact on their outcome.

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