"You Know That You're Living with an Impending Death": The Experiences of Individuals with Advanced Lung Cancer Receiving Immunotherapy or Targeted Therapy

Abstract

Lung cancer is the most diagnosed cancer and the leading cause of cancer‑related death in Canada. Although historically associated with poor survival, recent advances in immunotherapy and targeted therapies have improved prospects for extended life. These treatments, however, aim to slow disease progression rather than cure it, and their outcomes remain highly variable. This dissertation includes two studies that seek to characterize and understand the experiences of individuals with advanced lung cancer receiving immunotherapy or targeted therapy. The first study is a qualitative study (N = 24) conducted in partnership with Lung Cancer Canada that aimed to characterize the experiences of living with these treatments, assess preferred labels, and describe the supportive care needs of this population. Amongst individuals recruited through Lung Cancer Canada membership, we found no agreed-upon preferred label; "patient", "individual living with cancer", and "cancer survivor" were all endorsed for different reasons and were important with respect to meaning, identity, and outlook. Additionally, the results indicated that individuals shared common psychological concerns that unfolded across the disease trajectory. Participants reported significant uncertainty about the disease and their treatments and often endorsed a distressing fear of disease progression and death. As a follow-up to these results, the second study is a quantitative cross-sectional survey study conducted at The Ottawa Hospital (N = 115), investigating the prevalence and severity of fear of progression, death anxiety, uncertainty in illness, and symptom burden in the same population. One-quarter of the sample reported clinical levels of fear of progression, and two-fifths were in the moderate-to-high range for death anxiety. We also tested a previously validated model of Fear of Cancer Recurrence, which was not appropriate; fear of progression was predicted by death anxiety and uncertainty in illness, but not symptom burden and its interaction with uncertainty. Both studies indicate that fear of progression, uncertainty in illness, and death anxiety are important for this population, and future work should seek to understand how these worries manifest over the disease course, which constructs may be targets for treatment, and how clinicians can support this emerging population of individuals living long-term with advanced cancer.