Shared decision‐making in standardized cancer patient pathways in Norway—Narratives of patient experiences

Abstract

Background Cancer patient pathways (CPPs) were implemented in Norway in 2015–2017 to advance cancer diagnostics and treatment initiation. The aim of CPPs is to ensure standardized waiting times, but also to strengthen patient participation and shared decision‐making. This study investigates how patients enrolled in a CPP experienced shared decision‐making. Methods This study comprised of 19 individual semistructured interviews with patients who had been enrolled in a CPP at three hospitals in Norway. Twelve patients had breast cancer, four patients had prostate cancer and three patients had malignant melanoma. We analyzed their experiences using a narrative approach. Findings This study showed how participating in a standardized CPP provided different possibilities for shared decision‐making. The patients' narratives of shared decision‐making in CPPs included stories from the three cancer diagnoses through the following themes: (1) The predictable safeness of standardizations, (2) the ambivalence of making decisions and (3) opposing standardizations and pushing for action. Conclusion Standardized CPPs provided patients with predictability and safety. Shared decision‐making was possible when the cancer diagnoses supported preference‐sensitive treatment options. Balancing standardizations with individualized care is necessary to facilitate patient participation in CPPs, and the possibility of shared decision‐making needs to be discussed for each specific CPP. Patient or Public Contribution A service user representative from the Norwegian Cancer Society participated in designing this study.

Deconstructing (e)health literacy: aspects that promote and inhibit understanding of health information in breast cancer patient pathways

“…However, a Danish study found that although the CPPs were predictable in terms of time and organization, they were inadequate in terms of information, communication, involvement in treatment choices, flexibility, and access to the clinic after surgery (Løwe et al, 2020 ). A Norwegian study showed that patients found it difficult to take part in shared decision-making during the CPP, as most of their decisions relied on professional advice (Andersen-Hollekim et al, 2021 ). A premise for being able to take part in decision-making is that the patient understands the information communicated throughout the CPP.…”