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Improving Survivorship for Individuals Diagnosed With Lung Cancer

Stigma and shame can hinder the survivorship journey for lung cancer patients. An intervention co-created by CU Cancer Center member Jamie Studts, PhD, aims to make things better.

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by Greg Glasgow | November 2, 2021
CU Cancer Center | Lung Cancer | Jaime Studts, PhD

There are two things most people believe about lung cancer, says Jamie Studts, PhD, co-leader of the Cancer Prevention & Control Program at the CU Cancer Center: Those who suffer from it most likely caused it by using tobacco, and the prognosis for surviving the disease is poor.

While neither of those things is strictly true, the common perception of lung cancer means that those who survive it often do so alone, without the sense of community and togetherness that is the norm for many survivors of breast cancer, colorectal cancer, and other cancers.

That’s why, when he served as professor of behavioral science at the University of Kentucky Markey Cancer Center, Studts led the development of an intervention to help support lung cancer survivors through their survivorship journey.

Now on faculty at the University of Colorado School of Medicine, Studts — along with his colleague Jessica Burris, PhD, associate professor of psychology at the University of Kentucky — recently received a grant from the National Cancer Institute to further explore the intervention among lung cancer survivors in rural Kentucky. Working with collaborators from the James Graham Brown Cancer Center at the University of Louisville, the Markey Cancer Center at the University of Kentucky, and the GO2 Foundation for Lung Cancer, Studts, Burris, and their interdisciplinary team will measure the differences in outcomes between an intervention led by survivorship coordinators trained in the program he helped to create and a lesser-impact intervention in which lung cancer survivors have access to a workbook but no in-person counseling.

The trial, slated to launch in spring or early summer 2022, will run for three years. Pending favorable results, Studts and his team hope the study will impact practice guidelines for lung cancer survivorship care. They also are planning further implementation and adaptation studies to examine how to facilitate implementation in diverse community settings.

We talked to Studts about the intervention and the new study.

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Why is now a good time to launch an intervention like this?

Over the past several years, there have been innovations in lung cancer care that have infused a great deal of optimism and improved prognosis substantially, whether those are new surgical approaches, new radiation approaches, immunotherapies, or targeted therapies. The next logical step is survivorship. Historically, we haven’t really focused on lung cancer survivorship that much because the prognosis was so poor. But now that there is a growing community of survivors, it helps expand an interest in quality of life, wellbeing, psychosocial outcomes, and behavior change to reduce the likelihood of having a recurrence.

Why is survivorship more complicated for lung cancer survivors than for survivors of other cancers?

If you consider the advocacy, development, and support that women with breast cancer receive, the contrast is fairly stark. The community does not rally around a lung cancer survivor in the same way they do with a breast cancer survivor. Lung cancer advocacy organizations are smaller, and individuals diagnosed with lung cancer don’t to the same degree affiliate with others who have also been diagnosed with lung cancer. And that is linked with a lot of the bias, stigma, and shame associated with what the public believes is a self-inflicted diagnosis.

How does the survivorship intervention work?

We ask our rural cancer care facilities to identify the individuals who are responsible for survivorship care at their institution, and we train those individuals with a treatment manual. Then we treat it like a restaurant of sorts. We give the survivors a menu so they can choose the supports they are most interested in and believe are the most relevant topics to improving their quality of life. There are 12 options on that menu, and they can choose one or they can choose all 12. They might say, “I’m really stressed; I want to work on managing my anxiety,” or, “ I don’t care about anything else; I just want to quit smoking.” They choose their adventure, and they can meet face-to-face or by computer or telephone with the survivorship care specialist over a period of weeks to work on those specific issues.

How will the new randomized control study work?

Once we determine they’re eligible, individuals in the intervention group receive the full intervention, which they can do on the phone or in person or on other platforms, and the control group gets what we call bibliotherapy. We created a treatment manual for survival care specialists and also a workbook. For the control condition, we give survivors the workbook. They get access to all the information, but they navigate it independently. With this randomized clinical trial, we hope to be able to test this strategy of reaching rural individuals who are facing lung cancer with an intervention that can improve their quality of life in areas including education, managing symptoms, psychosocial wellbeing, and addressing stigma and biases, as well as making any behavior changes they want to make. We’re really trying to test the efficacy of this intervention to make sure we can get it on the map as something that could be more readily adopted by any cancer program caring for individuals diagnosed with lung cancer.

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Jamie Studts, PhD