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.

Keywords: Norway; cancer; cancer patient pathway; narrative; patient participation; shared decision-making; standardization.