Patient experience of follow‐up after surgery for kidney cancer: a focus group study

Abstract

ObjectiveTo explore patient experience of follow‐up care after kidney cancer surgery and to develop recommendations for best practice.MethodsWe conducted two focus groups, including 14 participants with experience of kidney cancer follow‐up after surgery, to elicit patient views on current follow‐up care. Thematic analysis was used to identify unifying themes to describe the patient experience of follow‐up, and the results were then used to develop a set of recommendations for best practice.ResultsWe identified six themes (feelings of abandonment; uncertainty about the plan; anxiety about appointments; variation in care; a need for information; and a need for emotional support) that described current patient experience and areas in which current care could be improved. In particular, while most of the participants felt that their physical needs had been met, many had struggled with unmet emotional needs and a lack of information and resources. This was especially noted in the period immediately following surgery, when feelings of abandonment were common, and around follow‐up scans and routine appointments, which were a source of anxiety. Our participants also described concerns about the lack of consistency between different hospitals and centres around the United Kingdom, with differences in the content and quality of follow‐up care. Based on the results, we developed a list of recommendations to address some of the challenges described through relatively minor changes to the care pathway.ConclusionsWe identified gaps and variability in current follow‐up care after kidney cancer surgery, and have developed a set of recommendations that, if implemented, would improve the follow‐up care experience for these patients.