Shared decision making in cancer treatment: A Dutch national survey on patients' preferences and perceptions

Abstract

Objective: Shared decision making (SDM) for cancer treatment yields positive results.However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision making yet. Therefore, we aim to explore to what extent discussion of therapy options, treatment consequences, and personal priorities is preferred and perceived by (former) cancer patients.Methods: An online questionnaire was distributed by the Dutch Federation of Cancer Patient Organisations among (former) cancer patients in 2018.Results: Among 3785 (former) cancer patients, 3254 patients (86%) had discussed treatments with their health care provider (HCP) and were included for analysis.Mean age was 62.1 ± 11.5; 55% were female. Discussing the option to choose no (further) treatment was rated by 2751 (84.5%) as very important (median score 9/10-IQR 8-10). Its occurrence was perceived by 28% (N = 899), and short-and long-term treatment consequences were discussed in 81% (N = 2626) and 53% (N = 1727), respectively. An unmet wish to discuss short-and long-term consequences was reported by 22% and 26%, respectively. Less than half of the (former) cancer patients perceived that personal priorities (44%) and future plans (34%) were discussed. Conclusion:In the perception of (former) cancer patients, several essential elements for effective SDM are insufficiently discussed during cancer treatment decision making.

Patient preferences and experiences of participation in surgical cancer care

“…Person-centered communication should address listening, perspective and preference taking, and assessing and satisfying patients' information needs (Street et al, 2019). A review highlights that most patients with cancer prefer active participation, while only some patients prefer a passive role (Noteboom et al, 2021).…”

Patient Preferences for Treatment Outcomes in Oncology with a Focus on the Older Patient—A Systematic Review

“…A recent systematic review on information needs in older patients with cancer showed that after patients received a cancer diagnosis, their focus was on short-term issues like understanding the situation, treatment options, and other practicalities, whereas information on functioning, quality of life, and dealing with late effects were given lower priority [ 6 ]. However, decision regret is more often linked to negative long-term outcomes [ 61 ], something that was discussed in half of the patients [ 62 ]. Since our study also shows that both quality of life (79%) and severe and persistent side effects (54%) were more frequently prioritized outcomes than transient short-term side effects (16%), patients should be aided in assessing and explicitly expressing which long-term outcomes matter most to them.…”

Chasing Milestones

“…5 For example, patients reported that discussion of post-treatment quality of life was most critical to them, while clinicians continued to focus heavily on clinical outcomes, and less than half of the patients felt that their personal priorities and future plans had been openly discussed. 6 Such studies may reflect the lingering hesitancy among some patients to voice their concerns or to feel empowered to guide discussions. In a recent study in which patients were asked about their discussions with their oncology team, 81% felt they had been properly informed of the short-term side effects of treatment, while only half considered the discussion of long-term side effects adequate.…”

“…6 Indeed, patients still perceive conversations concerning quality of life and future planning to be often overlooked or unaddressed, and few report that their preferences are discussed before treatment plans are being finalized. 6,7…”

“…As treatment regimens continue to extend survival, there remains work to be done to promote patient partnership and shared decision making. 2,6 Indeed, in minimizing the role that our patients play in their treatment planning, we can inadvertently dismiss the fact that cancer is now interwoven in their life trajectory. When the term was first coined in 1982, shared decision making was born out of the desire to include and promote personal well-being and self-determination among patients.…”