Lee Ann Johnson, lung cancer stigma expert and nurse scientist
Assistant Professor Lee Ann Johnson studies the impact that stigma and comorbidities have on the treatments and care patients with advanced lung cancer seek.

Assistant professor Lee Ann Johnson knows well the shame and pain that a lung cancer diagnosis exerts. Her mom, Donna King, a never-smoker, died in 2008 at age 54. Her grandfather Bob Robinson, who’d quit smoking in 1970, died of the disease in 2015. And others from the rural Arkansas town where Johnson was raised have struggled against the physical and psychic toll America’s number one killer exerts. Patients with lung cancer often feel blamed for their disease, which, in turn, makes them less likely to seek relief from palliative and end-of-life care. It’s that tide of suffering Johnson hopes to turn.

With grants from iTHRIV and UVA’s Center for Public Health, Johnson will study how advanced lung cancer patients’ comorbidities influence the treatments they seek, their ability to survive, and their quality of life.

Your interest in lung cancer is pretty personal.

It sounds dramatic, but it’s true. My promise to my mom on her deathbed was that I could “fix lung cancer” (she also made me promise to find a man, buy a house, and have babies). That kept it broad, but I feel like my nursing focus on palliative and end-of-life care for patients with lung cancer fulfills that final promise to her. She is the reason I have my PhD in nursing, and why my dissertation was related to stigma and advanced lung cancer.

How does stigma impact people with lung cancer?

Stigma stirs people’s shame and prevents them from accessing pain- and symptom-relieving palliative and end-of-life care, even when they desperately need it. And given that advanced lung cancer is almost always terminal—fewer than one in 10 people are alive five years after diagnosis—it’s critical to examine factors that influence and contribute to their quality of life.

They don’t have long to live, and the collective “we”—their loved ones, nurses, and other care providers—need to make sure beyond managing their symptoms that their mental and social well-being is intact, too.

Lee Ann Johnson, assistant professor and nurse scientist who studies lung cancer stigma

You studied stigma’s impact on individuals with lung cancer. What did you find?

Previous studies found that between 30 and 95 percent of lung cancer patients felt stigmatized by the disease. In my first American Cancer Society-funded study I took that work one step further by asking individuals who’d been diagnosed with lung cancer to see whether stigma itself inhibited the care they sought and received, and what specific factors seemed to be associated with that stigma. I asked 62 patients with either stage III or IV lung cancer whether they felt people avoided them because of their cancer, whether they perceived that others looked at them as “less of a person,” and whether they perceived they were to blame for their disease.

One-third reported high levels of stigma, a group that also experienced more frequent feelings of distress, depression, and anxiety, fewer meaningful relationships, and less enjoyment of life.

The verdict’s still out on whether the higher-stigma-experiencing patients had a greater symptom burden (more pain, more depression, and so on). It all points to the fact that we clinicians have a lot more work to do to support these patients. Lung cancer-related stigma is generally not part of a typical nursing assessment, but there’s evidence to suggest it would benefit people, isn’t complex, and can easily incorporated into routine care. It’s exactly the kind of space where a nurse makes every kind of difference.

How will your new work expand on your exploration of stigma?

We know a couple of things already: that people in rural areas have more comorbidities—higher rates of COPD, diabetes, and kidney disease, for example—and that they reside in places where lung cancer treatment is blunt, often one-size-fits all, and palliative care is almost non-existent. That was true for both my mom and grandpa, who—despite being quite far apart in age, comorbidities, and health risks—walked through the oncologist’s door and received essentially the same treatment, and little access to palliative care.

What I’m looking at now is how patients’ comorbidities impact their lung cancer and treatment outcomes. I’ll use two existing scales and electronic health data from UVA Cancer Center to create a descriptive ratings scale describing which comorbidities tend to cluster together that might impact lung cancer treatment. Being overweight and having COPD would put you in a higher-severity comorbidity group, and thus should be considered when choosing treatments such as chemotherapy, radiation, or aggressive palliative care only.

The eventual outcome of all this is to help people make better decisions when they’re diagnosed with advanced lung cancer and give them a true opportunity to choose aggressive palliative care options with the help of their provider so the time they have left is less painful and of a higher quality.

From the fall 2021 issue of Virginia Nursing Legacy.