Discussing expected long-term quality of life in the ICU: effect on experiences and outcomes of patients, family, and clinicians—a randomized clinical trial

Abstract

Purpose: To evaluate the effect of discussing personalized predictions of long-term quality of life (QoL) on patient and family experiences and outcomes, and on experiences of ICU clinicians. Methods: We conducted a randomized clinical trial in two Dutch hospitals, assigning adult ICU patients to receive usual care or the intervention: discussing the expected long-term QoL based on a validated prediction model, during a family meeting in the ICU. Primary outcome was patient and family experience with shared decision-making (CollaboRATE, range 0–100), evaluated < 3 days after the family meeting. Secondary outcomes included ICU professionals’ experiences (Collaboration and Satisfaction about Care Decisions [CSACD] and Ethical Decision-Making Climate Questionnaire [EDMCQ]), symptoms of anxiety and depression among patients and family, and patients’ QoL 3 months and 1 year post-ICU. Results: 160 patients were included, of whom 81 were randomized to receive the intervention and 79 to receive usual care. No significant differences were seen in patients’ and family members’ experiences (median CollaboRATE score 89 [IQR 85–100] in the intervention arm vs 93 [IQR 85–100] in the usual care arm, p = 0.6). The outcomes of patients did not differ, whereas at 1 year post-ICU family members in the usual care group reported a larger increase in depression symptoms (mean 2.3 [SD 4.2] vs 0.2 [SD 3.9], p = 0.04). Regarding ICU professionals’ experiences, an improvement in CSACD score was observed post-intervention (median 40 [IQR 34–45] vs 37 [IQR 32–43], p = 0.01), while no significant change in EDMCQ was found. Conclusion: Incorporating personalized predictions of long-term QoL in family meetings had no measurable effect on patients’ and family members’ experiences. However, a positive effect on family members’ symptoms of depression and ICU professionals’ experienced collaboration was observed. Trial registration: This study was registered at ClinicalTrials.gov: NCT05155150.