There is plenty of scientific data about the physical challenges patients with cancer endure, but more is needed to address psychosocial issues.
Psychosocial challenges for patients with lung cancer are unique to that of other patients with cancer, which is why any research into the psychosocial needs of patients with lung cancer needs to stand on its own. This is what the Cancer Support Community Research and Training Institute is looking to do under their flagship project, the Cancer Experience Registry.
At the CURE® Patient-Focused Sessions at the New York Lung Cancers Symposium® on Nov. 9, CURE had the chance to sit down with Kelly Clark, MA, manager of research with Cancer Support Community, and discuss how the Cancer Experience Registry allows researchers to look at treating patients with lung cancer from a psychosocial angle.
The flagship project at the Cancer Support Community Research and Training Institute is called the Cancer Experience Registry, which is an online survey that documents the cancer experience for both patients and caregivers. Within the cancer experience registry, we have an entire lung initiative that is dedicated to understanding the unique aspects of lung cancer.
In addition to that, we have a report that we have published based on the findings from this lung initiative. And we also go to international research conferences to talk about the data that we collect. In recent years we have talked about issues like stigma for lung cancer patients, psychosocial distress, and quality of life.