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Kim Thiboldeaux Explains Patient Misconceptions of Cancer Clinical Trials

Kim Thiboldeaux, chief executive officer of the Cancer Support Community, discusses the importance of providing strong community support, the misconceptions of clinical trials, and creating a tailored care plan.


Kim Thiboldeaux, chief executive officer of the Cancer Support Community, discusses the importance of providing strong community support, the misconceptions of clinical trials, and creating a tailored care plan.

Transcript (slightly modified for readability)

What is the importance of having strong community support for patients with cancer, whether they are newly diagnosed or not?

So we know that when someone is diagnosed with cancer, 3 of the most common things that they experience are a loss of hope, a loss of control, and a sense of isolation. So at the Cancer Support Community, and so many other non-profit organizations around the country, we're really devoted to making sure that patients can come together in a community, that they can find hope, that they can connect with others so that they don't feel so isolated.

And also we want to make sure that patients find the tools and resources that they need throughout the cancer journey to be educated, to be empowered and to really find a path that works for them.

What barriers are there that prevent patients from participating in cancer clinical trials and what can be done to improve participation?

We know that there are a lot of barriers to patient participation in clinical trials. We know that there are cost issues, that there are access issues, and availability of trials. One of the things that we see often at the Cancer Support Community, is that patients oftentimes don't understand what a cancer clinical trial is.

Patients oftentimes think that in a cancer clinical trial, a treatment trial, that they're going to get a placebo, and it's just not the case. So we often have patients saying, "I never even thought of participating in a clinical trial because I don't want to get the placebo."

So from our standpoint and the patient advocacy community, we believe that we need to do some use basic education, that we need to train patients, we need to get them the information about clinical trials as a starting point so that they can think about a clinical trial as a treatment option when they are diagnosed with cancer and not something that is a last-ditch effort or something that they would only have access to when everything else has failed.

Patients and physicians don't always see eye-to-eye on what is the most important: side effects, efficacy, or quality of life. How do patients overcome these differences?

There's a new emerging trend in cancer care called "distress screening," where when a patient is diagnosed with cancer, early in that process we're screening them for distress to find out what matters to them, what's important, what they're most concerned with, what we can help with.

We really feel at the Cancer Support Community, that if we can implement distress screening universally for all patients—and these are quick surveys of 15, 20 questions—if we can implement distress screening, we can really learn from the beginning what matters to a patient, what their values are, what their priorities are. And it really enables an environment where the patient can work with the healthcare team to decide what those priorities are and make a care plan that is really tailored to that patient.

 
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