Information Service "My Cancer Navigator" to Support Shared Decision-Making: An Online Survey Among Patients with Cancer and Their Caregivers.

Abstract

The personalized information service My Cancer Navigator (MCN) answers therapy-related questions of patients with cancer and their caregivers, to address information needs and contribute to shared decision-making (SDM). An explorative and descriptive cross-sectional study using online surveys was conducted to assess whether users perceived a change in factors contributing to SDM after using the service. Of 253 invited MCN users, 109 (43.1%) filled out the survey (64.2% patients and 35.8% caregivers). Most participants experienced a positive change in their emotional well-being (72.5%) and knowledge level (86.3%). The majority (68.5%) of patients reported being able to cope better with their disease while 76.4% of caregivers felt more able to support the patient throughout the disease process. Discussing treatment preferences and making decisions with health-care professionals (HCPs) became easier for 48.5% and 44.0% of patients, respectively. Of all participants, 52.0% reported a change in disease management. These findings suggest that most participants perceived MCN as impactful. The service facilitated the implementation of SDM from the patient perspective by improving communication with HCPs, increasing knowledge level, improving emotional well-being, and helping them cope better with the disease. Further research should explore how this type of service can be integrated in the care pathway.