The Impact of Disease Labels on Disease Experience in Patients with Prolonged Incurable Cancer.

e22011 Background: Advances in oncology have resulted in prolonged disease trajectories in patients with incurable cancer inducing discussions about the ‘right’ medical terminology. The impact of choosing a disease label on well-being can be high. We examined the impact of disease labels on well-being in patients with prolonged incurable cancer. Methods: Qualitative study based on 33 conversations covering a period of 2 years (2015-2017) at the day-care unit of a comprehensive cancer center in the Netherlands. 19 patients with incurable breast cancer (at least one year after diagnosis) and 11 patients with incurable lung cancer (at least 6 months after diagnosis) with cancer remission were included. Patients had received at least a second line of systemic treatment. Conversations were openly framed by questioning how patients felt in this stage. Questions about disease-labeling were asked explicitly and implicitly. Results: Patients ascribed different disease labels to themselves, either on purpose or not. They varied in their preference regarding specific disease labels (e.g. ‘chronic’, ‘palliative’, ‘patient’) in their communication about their disease. Patients with a more positive mood were often more comfortable with the label ‘chronic’, whereas patients with a less positive mood felt they could become trapped in a definition until the end of their life. Some patients preferred not to label their disease at all, as they felt it would make them ‘less human’. Some labels used by healthcare professionals distressed patients, especially when they heard different disease-labels from different healthcare professionals. Some patients however explicated to stick to their own disease label. Patients who were more willing to perceive themselves as a ‘patient’ tended to receive more support. Conclusions: Patients’ use of disease labels are part of their coping strategy, that is particularly associated with maintaining hope of a longer life. This emphasizes the importance to include appropriate disease labels by healthcare professionals. More research is warranted to explore which disease labels suit different patients best and to explore other outcomes than well-being such as (the frequency) of treatment decisions.