From Burden to Empowerment. Patient-Reported Influencing Factors on Participation in Shared Decision Making in Oncology, a Meta-Study.

Objective: We aim to provide a literature overview on patient-reported barriers and facilitators to participation in Shared Decision Making (SDM) within the setting of oncology.

Methodology: Within the set of selected studies for a larger qualitative meta-summary, using five databases, we selected the studies that had surveyed patients with oncologic illness for further analysis in this paper. Search terms were based on the concepts: 'decision making', 'patient participation', 'patient perceptions' and 'study design' aimed at eliciting patients' perspective, including patient surveys, interviews and focus groups.

Results: Out of the 90 studies that had been selected for the larger review, we selected 22 articles concerning oncologic illness for more detailed analysis in this review. In total, we identified 33 different barriers and facilitators. Based on the most frequently reported barriers and facilitators, we defined six broad analytical themes, reflecting patients' most frequently recurring challenges (Themes 1 and 2) and needs (Themes 3-6) in this setting: (1) 'High burdens', (2) 'Low self-efficacy to participate', (3) 'Clear information provision', (4) 'Social support', (5) 'Physicians' support', (6) 'Education, preparation and assertiveness'.

Conclusion: The high decisional and emotional burdens oncologic patients experience appear to be specific challenges to SDM in oncology, which often undermine patients' self-efficacy to participate and complicate patients' engagement in SDM. However, when offered the right support, patients may overcome the existing burdens and become more empowered to engage in SDM.

Practice implications: These insights need to be integrated in SDM strategies so that they may serve the ethical imperative of greater equality and the inclusion of diverse patient groups in different SDM settings.