Practices and perspectives of patients and healthcare professionals on shared decision-making in nephrology

BACKGROUND: Given the complexity and variety in treatment options for advanced chronic kidney disease (CKD), shared decision-making (SDM) can be a challenge. SDM is needed for making decisions that best suit patients’ needs and their medical and living situations. SDM might be experienced differently by different stakeholders. This study aimed to explore clinical practice and perspectives on SDM in nephrology from three angles: observers, patients and healthcare professionals (HCPs). METHODS: An explanatory sequential mixed methods design was used. First, in the quantitative part of the study, outpatient consultations with patients with advanced chronic kidney disease (eGFR < 20 ml/min) were video recorded and SDM was assessed using the OPTION(5) instrument. Subsequently, in the qualitative part, patients and HCPs reflected on their own SDM behaviour during individual stimulated recall interviews which were analysed using deductive thematic content analysis. RESULTS: Twenty nine consultations were recorded and observed in seven hospitals. The mean SDM score was 51 (range 25–80), indicating that SDM was applied to a moderate extent. The stimulated recall interviews with patients showed that they rely on the information provision and opinion of HCPs, expect consistency and support, and desire a proactive role. They also expect to be questioned by the HCP about their SDM preferences. HCPs said they were willing to incorporate patients’ preferences in SDM, as long as there are no medical contraindications. They also prefer patients to take a prominent role in SDM. HCPs ascribe various roles to themselves in supporting patients’ decision-making. CONCLUSIONS: Although SDM was applied by HCPs to a moderate extent, improvement is needed, especially in helping patients get the information they need and in making sure that every patient is involved in SDM. This is even more important given the complex nature of the disease and the relatively high prevalence of limited health literacy among patients with chronic kidney disease. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12882-022-02887-4.