Scanxiety, more than fear alone : a design-thinking approach to redesign the cancer care journey

Context: Scanxiety is used to describe scan-associated anxiety/distress and related concerns of cancer patients and survivors undergoing scans. Research has focused on understanding the phenomenon and exploring interventions mainly related to the scan itself. However, scanxiety extends beyond the scan itself, recurring cyclically with pre-, per-, and post-scan phases, and is amplified by the need for periodic imaging. Therefore, the scope of research should not be limited to the scan moment itself or only the patient perspective, as the relatives’ perspective is often overlooked. Our research aims to explore scanxiety and co-create interventions to reduce scanxiety throughout the patient journey. Methods: This qualitative study used a service design thinking approach to guide the process with a focus on person-centredness. Participants were recruited using a maximum variance sampling method. Patients with five different types of cancer involving different scanning regimens were selected: patients with testicular cancer, breast cancer, multiple myeloma, lymphoma or melanoma in a follow-up stage, and their close relatives. Additionally, healthcare professionals involved in cancer care participated. In the first phase, nine co-creation workshops were organised to define the scan journey, its link to scanxiety, and identify potential interventions to reduce it. In the second phase, two workshops were organised to concretise interventions and discuss their feasibility and effectiveness, resulting in a catalogue detailing, among others, interventions, target groups, and relevant stakeholders. An abductive thematic data analysis was conducted, following Braun and Clarke’s six-stage process, using Miro. Results: Our empirical findings showed that scanxiety was experienced throughout the entire journey by both patients and their relatives. It was described as a multifaceted and recurrent phenomenon accompanied by a range of emotions, physical discomfort and various effects on social interactions. Several key themes were identified regarding factors influencing scanxiety and related interventions. One theme was transparency and predictability, with participants expressing uncertainty about what the scans entail (e.g. does it hurt?). They expressed a need to know if and how long the appointment would be delayed (e.g. If I knew the delay time, I could have walked around). They also felt that doctors did not provide all the information after the scan. A visual timeframe for both the scans and results was suggested, as well as support in using e-health platforms to access information. Other themes included practical considerations, the physical environment and professional and social support, among others. Discussion: Our study shows that scanxiety is a more multifaceted phenomenon than previously suggested by research. While the scan procedure and the uncertainty about the results remained the main triggers, other influencing factors also emerged. These factors change at different stages of the journey, highlighting the importance of creating a flexible approach to address scanxiety. Above that, scanxiety is not only experienced by the patient, but also by their relatives. While their focus is less on the scan procedure itself, it is more on the waiting time on the day of the scan and the anticipation of the results. Further research is needed to explore their levels of scanxiety and support needs. This research can guide organisations in developing and implementing targeted interventions that address the specific needs identified at each stage of the patient journey, offering comprehensive support for both patients and their relatives.