Patient and contact nurse perceptions regarding patient participation during encounters prior to cancer treatment-a cross-sectional study

Background Contact nurses in cancer care play a key role in providing information about planned treatment and care. However, little is known about how their communication skills influence patients’ ability to participate actively in their care. There is also limited knowledge about contact nurses’ capacity to engage patients in decision-making related to information sharing and self-management. This study aimed to examine the level of agreement between patients and contact nurses regarding perceived patient participation during pre-treatment encounters and to identify factors influencing agreement or disagreement. Methods A cross-sectional assessment was conducted with 63 cancer patient–contact nurse pairs at an oncology outpatient clinic in a large university hospital. Patients and contact nurses completed the Dyadic OPTION scale immediately after a scheduled encounter prior to treatment initiation. Before the encounter, patients also completed the Patient Activation Measure (PAM-13®), the Hospital Anxiety and Depression Scale (HADS), and study-specific questions. Data were analyzed using percentage agreement and linear regression, along with content analysis of an open-ended question about agreement on the main issues discussed. Results Agreement between patients and contact nurses varied, although most patients (95%) reported high satisfaction with the encounter. Depression symptoms were the primary factor associated with lower agreement. Higher agreement occurred when both parties reported discussing the same main problem. Disagreement was most often related to patients not being asked about their prior knowledge or preferred level of involvement in treatment and care. Conclusions Low agreement between patients’ and contact nurses’ perceptions of patient participation and of the issues discussed before treatment may lead to misunderstandings and missed information, posing a potential risk to patient safety. Contact nurses therefore need to proactively assess patients’ prior knowledge and preferences for involvement. Understanding patients’ existing knowledge and experiences enables nurses to tailor information more effectively, improving comprehension and opportunities for participation. Contact nurses should also ensure they have accurately understood each patient’s concerns and that patients fully comprehend the information provided. Ongoing development of communication skills and a stronger focus on effective information exchange are essential.