Background: Patient preference has become increasingly important with the growing number of treatment options for localized kidney cancer. Current evidence suggests equipoise in oncological outcomes among these treatment options. Our aim is to better understand the process of decision-making from a patient and carer perspective.
Methods: Using the network of the International Kidney Cancer Foundation, we invited patients with localised kidney cancer to participate in focus groups/interviews. Glatzer et al’s modified decision-making framework was used to structure the data and thematic analysis, combining inductive and deductive approaches, was applied to identify themes.
Results: We conducted three focus groups across three countries (DE, NL and UK) and four interviews (UK/NL) from June to October. Fifteen patients (6/9 female/male) and one carer (female) participated. Out of the 15 patients, 13 were treated with surgery, 1 with ablation and 1 patient was offered active surveillance. Preliminary analysis indicates the following main observations: regarding contextual factors, patients’ personal circumstances seem to influence their preference for a face-to-face meeting or a telephone call for receiving their diagnosis or having follow up appointments. As an important decision maker factor, patients named “being rushed to take a decision”. Across all countries, patients felt that taking more time to decide would have had an impact on their treatment decision. For kidney cancer specific factors, the impact of offering additional prognostic procedures, as observed in the patient diagnostic pathway, emerged as a theme. For example, those patients who were offered a biopsy felt more informed and noted a perceived positive change in their treatment decision making.
Conclusions: This study highlights the diverse and complex nature of treatment decision making in localised kidney cancer and the importance of individual patient preferences. The identified themes can be used to improve shared decision making and enhance patient satisfaction, which is known to impact treatment adherence.