Navigating choices: understanding the decision-making journey of patients with localised kidney cancer

Abstract

Objective: To explore patients’ experience of decision making regarding treatment of localised kidney cancer. Methods: A total of 21 patients with localised kidney cancer, across three countries, participated in either four focus groups or seven semi-structured interviews that lasted on average 2 h. Focus groups and interviews were all conducted in the participants' native language, recorded, transcribed and (if applicable) translated into English. Thematic analysis was used to develop a codebook and identify themes. Results: All participants expressed a desire to be actively involved in the treatment decision-making process. However, due to the emotional toll of the cancer journey, which often necessitates quick decisions, actively engaging in the decision-making process was described as challenging. The study revealed 12 key themes. These themes included the impact of diagnostic paths, patient characteristics, patient empowerment, health literacy, source of support, fear of recurrence, trust in treatment and healthcare providers, shared decision making (SDM), professional interaction, personal belief system, and organisational and administrative issues. Conclusions: The findings highlight the complexity of decision making, underscoring the desire for patient involvement, SDM, and clear communication. We reveal a significant gap between research recommendations and clinical practice, emphasising the need to translate research findings to clinical application to enhance patient-centred care.