Preparing for survivors

Patient-centric care empowers lung cancer survivors to choose what matters most

Historically, research on lung cancer survivorship has been limited. Few patients lived long enough to be studied. Now, with advancements in early detection and medical interventions, Kentucky LEADS is planning for a new kind of patient: survivors.

“We’re anticipating an emerging population of individuals who are going to have longer-term survivorship care needs,” says Jamie Studts, principal investigator for Kentucky LEADS. “And we’re going to be prepared for that.”

The primary focus of Kentucky LEADS’ Survivorship Care component is training a new group of caregivers to better engage patients by empowering them with choices. These Survivorship Care Specialists, as they’re called, will guide patients through the treatment process, helping them choose from a menu of “training modules,” focused on common concerns faced by lung cancer survivors. The specialists coach patients, but each individual sets his or her own priorities.

“It’s all about shared decision-making,” says Tara Schapmire, a co-investigator with Kentucky LEADS. Schapmire helped design the modules, which fall into three main categories: the symptoms patients typically experience, what to expect during treatment, and the psychological and social aspects of the disease.

“It’s about decreasing their physical and emotional symptoms and increasing their confidence in being able to live with the diagnosis of cancer.” -Tara Schapmire, Kentucky LEADS co-investigator

This patient-driven approach radically differs from past treatment patterns, in which lung cancer patients, often because of self-blame, have generally been resigned to their fate and disengaged with their care. 

“Communities don’t typically rally around people with lung cancer the way they do with individuals diagnosed with other cancers,” Studts says, “so these folks are not as involved in their treatment decisions, and often passively receive treatment.”

By giving them the power of choice, Kentucky LEADS-trained Survivorship Care Specialists encourage patients to become active drivers of their own treatment, and better stewards of their health.

“It’s about decreasing their physical and emotional symptoms and increasing their confidence in being able to live with the diagnosis of cancer,” Schapmire says. “And ultimately give them some hope.”

The Kentucky LEADS Collaborative—Lung Cancer Education, Awareness, Detection and Survivorship—is funded by the Bristol Myers Squibb Foundation as part of the Bridging Cancer Care initiative to expand the limited scope of community-based resources and survivorship support programs to underserved populations in the U.S. Kentucky LEADS addresses the full spectrum of lung cancer care with three main components: provider education, survivorship care and early detection. Through survivorship care, Kentucky LEADS is empowering those living with the various stages of lung cancer to manage their symptoms, engage in their treatment and effectively cope with the psychosocial effects of the disease.

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