The Impact of Patients’ Disease-Labels on Disease Experience For Patients Living Longer with Incurable Cancer: A Qualitative Study

Importance: Advances in oncology have resulted in prolonged disease trajectories, also for patients with incurable cancer. This has induced discussions about the ‘right’ medical terminology. The impact of choosing a specific disease-label on well-being can be high. Objective: To examine the impact of disease labels on disease experience in patients living longer with incurable cancer. Design: Qualitative study based on short conversations in the outpatient clinic in a Dutch comprehensive cancer hospital (2015-2018) supplemented with in-depth interviews from hospitals (2021). Setting: Hospital and home setting (via Zoom) Participants: We included 29 short conversations and 4 indepth interviews with patients with incurable breast and lung cancer, all in stable (but incurable) condition. Main outcome measures: We specifically focused on disease labelling and patient’s mood (positive/negative mindset) during the disease course. Results: A substantial group of patients (n=21) used (or explicitly not used) disease-labels in their short conversations about their disease. They varied in their preference regarding disease-labels (e.g. ‘chronic’, ‘palliative’, ‘human’ etc.). Patients with a more positive stance seemed more comfortable with the label ‘chronic’, whereas patients with a less positive stance seemed to perceive disease-labels such as ‘chronic’ as a lifelong burden. Some patients preferred not to label their disease at all. Healthcare professionals’ use of disease-labels could sometimes distress patients, especially when patients heard different disease-labels from different healthcare professionals. Patients not using any disease-label in their communication (n=12), seemed to be less engaged with their disease. Conclusions: Patients labeling their disease is part of their coping strategy. More research is warranted to explore which disease-labels suit different patients confronted with incurable cancer, best.