A qualitative analysis of uncertainty in cancer diagnosis and treatment.

Abstract

e24065 Background: Uncertainty is an inherent part of patients’ cancer experiences and can affect their psychological well-being; however, most research to date has examined illness uncertainty through preset questionnaires. We conducted a qualitative analysis to understand key areas of uncertainty, metaphors used to describe the uncertainty, and coping mechanisms employed by patients. Methods: Patients diagnosed with lung, colorectal, or breast cancer completed semi-structured interviews asking broadly about their diagnosis and treatment as well as the language used to describe their cancer. Patients were presented with metaphor categories, including uncertainty metaphors, such as “mystery” or “puzzle” and described how the metaphors applied to their lived experiences with cancer. Three investigators analyzed interviews through cycles of open and axial coding using NVivo software. Results: Of the 15 patients included in our study, 60% identified as female (n=9) and 46.7% were diagnosed with metastatic cancer (n=7). Approximately half of patients affirmed use of uncertainty metaphors (n=7), the majority of whom did not expect to be cured (n=6). For patients who used metaphors, the primary areas of uncertainty at diagnosis centered around feeling blindsided by their diagnosis, being unfamiliar with the medical jargon used, and navigating complexities in developing a treatment plan due to unexpected clinical features of their cancer. As treatment began, the uncertainty shifted to the possibility that treatment efficacy will decline. Positive religious coping assuaged uncertainty for patients by allowing them to relinquish control of their disease progression to God. Patients believed that God had a plan they were not privy to and that obstacles in their treatment were deliberately placed to help them grow. Conclusions: Uncertainty metaphors provide patients with a framework through which they can process the unknowns of their cancer diagnosis and treatment and were often used by patients who did not believe they would be cured. Positive religious coping mitigated uncertainty, as patients believed God was certain about their disease trajectory. Qualitative descriptions of uncertainty. Theme Quotes Area of Uncertainty Surprise about diagnosis "I didn’t know [my diagnosis] was coming…I thought I just had a bad cold or allergic reaction." Medical jargon "I have HER2 positive, estrogen positive, and progesterone positive [breast cancer]--there was uncertainty, what is that? I know what estrogen and progesterone are, but I’ve never heard of HER2." Treatment efficacy "There’s no cure that is applicable to all the people. It works for some people, it doesn’t work for others...it’s like a puzzle." Religious Coping "God knows exactly what is going on and what is happening.""I feel that God is in control of it…He’s the one that is pulling me through the process."