Patient-Related Issues

Guest Expert: Gwendolyn Quinn--Focus on Fear

Last Updated: Aug 30, 2012

I am pleased to introduce our AccrualNet Guest Expert: Gwendolyn Quinn, PhD, Associate Professor at the H. Lee Moffitt Cancer Center & Research Institute in Tampa, Florida. Dr. Quinn is the Director for Moffitt's Survey Methods Core Facility and is the director of the National Training Collaborative for Social Marketing, a collaboration with CDC and AAMC that trains health care professionals in the field of social marketing.

Dr. Quinn's research concentrates on assessing behavior determinants of health decisions, including studying barriers to patient accrual to clinical trials. I was fascinated to read one of Dr. Quinn's recent articles,"Cancer Patients' Fears Related to Clinical Trial Participation: A Qualitative Study" and delighted that Dr. Quinn was willing to share her research and perspective about fear and clinical trial decision making with the AccrualNet community. After reading Dr. Quinn's post, join the conversation by posing a question or sharing your observations on the dynamic of fear in clinical trials.

From Dr. Quinn:

“We have nothing to fear but fear itself” – said Franklin D Roosevelt. But fear is something. Sensing danger and feeling afraid are primal instincts. The fight or flight response is one of many instinctual responses that have perpetuated the human race. Few situations cause as much fear as learning you have cancer. The instinct to emotionally withdraw from the situation or fight back with negative emotion is a common reaction to a cancer diagnosis. When we feel powerless we tend to feel afraid. There are many aspects of receiving a cancer diagnosis that evoke legitimate fear: fear of death, fear of pain, fear of disfigurement or disability, and just plain old fear of the unknown. To what extent do these fears interfere with our ability to make a healthcare decision?

In a recent study we examined lung cancer patient’s thoughts on clinical trials. We conducted interviews with over 40 patients. Every one of the respondents mentioned the word fear in some context of discussing a clinical trial. In fact, across this sample, the word fear was mentioned 144 times in the transcripts. Many of the instances of fear were related to the cancer diagnosis and fear of death, but almost as many were fears about hearing the term “clinical trial.” The majority of patients perceived the offer of a clinical trial to mean there were no other options for them or their physician did not have hope for them. Having these prior misconceptions about clinical trials and then hearing the offer only exacerbated their fears. In some cases, the offer of a clinical trial increased the fear and distress they felt about their lung cancer diagnosis.

The general public holds myths and misperceptions about cancer clinical trials. Some of these are fueled by media reports or anecdotal information. Why should health researchers care what the general public thinks? It is important for us to educate the public about trials for several reasons. First, although we don’t like to think about it, one day we may be the “general public “and the next we are diagnosed with cancer. Secondly, decisions about clinical trials are usually made within the context of family and friends. So it is important to educate everyone; even if you are not faced with the cancer diagnosis yourself, you may be in a position to counsel or discuss with a family or friend.

“Priming” the public about cancer clinical trials holds great promise for improving clinical trial accrual rates. We tend to react negatively when we are afraid. If we think trials are for people with no other hope or a last resort, we are likely to become afraid of the offer. By educating the public and the newly diagnosed about clinical trials in general, we help prepare them for informed decision making in the event they are offered a specific clinical trial at some point in their cancer journey. Priming won’t take away the fear a cancer diagnosis brings, but it may reduce some of the fear associated with the unknown. Our goal for public health education about clinical trials should truly be focused on educating; we want people to know what they are saying no to. Knowledge reduces fear, knowledge is power.

Gwendolyn Quinn, PhD

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Originally posted by: ellen on the former AccrualNet site on Mar 28, 2012.

This rings true for me! About a year and a half ago, a family friend whom I consider to be pretty savvy when it comes to cancer care (with personal and strong family history of cancer), told me how cruel she thought it was when an oncologist offered her friend’s newly diagnosed mother a clinical trial on her first oncology clinic visit. She said that the friend and her mom were devastated by the suggestion and were now convinced that there was “no hope” for her. My friend emphasized the timing of the clinical trial suggestion as being the most frightening part. I wonder if there are any data about the effects of the timing of clinical trial discussions after diagnosis and am interested in hearing if its common practice to introduce studies on the first patient encounter. It certainly was when I was a cancer center study nurse!

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Originally posted by: Anonymous on the former AccrualNet site on Apr 03, 2012.

This reminds me again of the earlier blog post on AccrualNet about the importance of strategically integrating family members and caregivers into discussions around clinical trials. Figuring out when and how to introduce trials to the patient and caregiver is an art and a science --and as you know so well, no one approach works for every patient. But being aware of individual pt/caregiver preferences for how/when this information is communicated can make all the difference in understanding options and considering a trial. If you have any tools to share that might help in communicating with patients and caregivers, please pass them along. These kinds of resources are invaluable!

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