Objective: To identify preferences of advanced lung cancer patients for receiving information and participating in decision-making concerning treatment options, health-care-setting transfers and end-of-life decision-making.
Methods: Over the course of 1 year, pulmonologists and oncologists in 13 hospitals in Flanders, Belgium, invited patients with an initial diagnosis of non-small-cell lung cancer IIIb/IV to participate in the study. Shortly after inclusion, the patients were interviewed with a structured questionnaire.
Results: One-hundred and twenty-eight patients with a median estimated survival time of 10 months participated. Almost all wanted information on diagnosis, treatment and cure rate and slightly fewer on life expectancy (88.2%). Information about palliative care was desired by 63.5% of patients and information about end-of-life decisions by 56.8%. The percentage of patients who preferred personal control over medical decision-making increased to 14.8% for treatment, 25.0% for transfer and 49.2% for end-of-life decisions, all of which were higher than for medical decisions in general (9.3%).
Conclusion: Information and participation preferences of advanced lung cancer patients differ depending on the type of information or decision.
Practice implications: As part of a patient-centred approach, physicians should not only check the general but also the specific information and participation preferences of their patients.