Shared decision making across disease areas in Belgium: A cross-sectional survey of patients’ preferences, experiences, and role alignment

Objectives Little is known about how shared decision making (SDM) is understood, valued, and experienced by patients in Belgium. This study aimed to examine 1) patients’ knowledge of SDM; 2) their preferences for and experiences with involvement in decision-making, including alignment between preferred and experienced roles and associated decision-related outcomes; and 3) perceived barriers and facilitators to SDM implementation. Methods A cross-sectional online survey was conducted among adults aged ≥18 years living in Belgium with a chronic disease or long-term health condition. The survey included validated instruments (Control Preferences Scale, CollaboRATE, SDM-Q-9, Decision Regret Scale) alongside study-specific items. Results 917 participants completed the survey. The mean objective knowledge score was 6.34/10, with gaps in understanding core SDM components. Slightly more than half of participants preferred a shared role in decision-making (52.6%), whereas fewer reported experiencing such involvement (38.3%). Overall concordance between preferred and experienced roles was moderate (51.4%), and 36.8% of participants experienced less involvement than desired. Participant-reported SDM was moderate (SDM-Q-9 mean 59.3/100; CollaboRATE mean 6.43/9), and only 16.2% reported the highest level of SDM. Greater perceived involvement was associated with higher satisfaction and lower decision regret (both p < 0.001), with the most favorable outcomes observed among participants whose experienced role matched their preferred role. Key barriers included time constraints and communication challenges, whereas trust was seen as the most important facilitator. Conclusion Patients’ experienced involvement often does not match their preferences. Because role alignment was associated with higher satisfaction and lower decision regret, SDM implementation should focus on tailoring involvement to individual preferences. Implications Improving SDM requires a comprehensive approach that supports both healthcare professionals and patients. This includes strengthening communication and decision-making skills, enhancing patient awareness of SDM, and addressing system-level barriers. Further research should explore SDM in specific clinical contexts to inform targeted implementation strategies.