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.
Objective: The 5-level EuroQoL (EQ-5D-5L) is a patient-reported outcome measure frequently used in stroke research. However, it does not assess the cognitive problems many patients with stroke experience. The aim of this article is to compare the content validity, internal consistency and discriminative ability of the EQ-5D-5L with and without an additional cognitive domain (EQ-5D-5L+C), administered three months post-stroke. Design: Cross-sectional study. Setting: Six general hospitals in the Netherlands. Subjects: In all, 360 individuals with stroke three months after the event. Interventions: Not applicable. Main measures: The modified Rankin Scale and EQ-5D-5L+C were administered in telephone interviews three months post-stroke. Results: A total of 360 patients with stroke were included. Mean age was 68.8 years (standard deviation (SD) = 11.7), 143 (40%) were female, 334 (93%) had had an ischemic stroke, 165 (46%) had a National Institutes of Health Stroke Scale (NIHSS) score ⩽ 4 at presentation and the Barthel Index was 17.2 (SD = 4) four days post-stroke. Cognitive problems were reported by 199 (55%) patients three months post-stroke. Internal consistencies of the EQ-5D-5L and EQ-5D-5L+C were 0.75 and 0.77, respectively. Adding a cognitive domain resulted in a decrease of the ceiling effect from 22% to 14%. Both EQ-5D-5L and EQ-5D-5L+C showed good discriminative ability, but differences between patients with different modified Rankin Scale scores and with/without reported decrease in health and daily activities were slightly larger with the EQ-5D-5L+C compared to the EQ-5D-5L. Conclusions: The EQ-5D-5L+C, which includes a cognitive domain that is highly significant for stroke patients, showed increased content validity and good discriminative ability, without losing internal consistency.
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