• Nancy Kentish-Barnes, Valérie Seegers, Stéphane Legriel, Alain Cariou, Samir Jaber, Jean-Yves Lefrant, Bernard Floccard, Anne Renault, Isabelle Vinatier, Armelle Mathonnet, Danielle Reuter, Olivier Guisset, Christophe Cracco, Amélie Seguin, Jacques Durand-Gasselin, Béatrice Éon, Marina Thirion, Jean-Philippe Rigaud, Bénédicte Philippon-Jouve, Laurent Argaud, Renaud Chouquer, Mélanie Adda, Laurent Papazian, Céline Dedrie, Hugues Georges, Eddy Lebas, Nathalie Rolin, Pierre-Edouard Bollaert, Lucien Lecuyer, Gérald Viquesnel, Marc Léone, Ludivine Chalumeau-Lemoine, Zoé Cohen-Solal, Maité Garrouste-Orgeas, Fabienne Tamion, Bruno Falissard, Sylvie Chevret, and Elie Azoulay.
• Assistance Publique-Hôpitaux de Paris, Famiréa Research Group, Saint-Louis University Hospital, Paris, France.
• Intensive Care Med. 2016 Jun 1; 42 (6): 995-1002.

PurposeTo develop an instrument designed specifically to assess the experience of relatives of patients who die in the intensive care unit (ICU).MethodsThe instrument was developed using a mixed methodology and validated in a prospective multicentre study. Relatives of patients who died in 41 ICUs completed the questionnaire by telephone 21 days after the death, then completed the Hospital Anxiety and Depression Scale, Impact of Event Scale-Revised and Inventory of Complicated Grief after 3, 6, and 12 months.ResultsA total of 600 relatives were included, 475 in the main cohort and 125 in the reliability cohort. The 15-item questionnaire, named CAESAR, covered the patient's preferences and values, interactions with/around the patient and family satisfaction. We defined three groups based on CAESAR score tertiles: lowest (≤59, n = 107, 25.9 %), middle (n = 185, 44.8 %) and highest (≥69, n = 121, 29.3 %). Factorial analysis showed a single dimension. Cronbach's alpha in the main and reliability cohorts was 0.88 (0.85-0.90) and 0.85 (0.79-0.89), respectively. Compared to a high CAESAR score, a low CAESAR score was associated with greater risks of anxiety and depression at 3 months [1.29 (1.13-1.46), p = 0.001], post-traumatic stress-related symptoms at 3 [1.34 (1.17-1.53), p < 0.001], 6 [OR = 1.24 (1.06-1.44), p = 0.008] and 12 [OR = 1.26 (1.06-1.50), p = 0.01] months and complicated grief at 6 [OR = 1.40 (1.20-1.63), p < 0.001] and 12 months [OR = 1.27 (1.06-1.52), p = 0.01].ConclusionsThe CAESAR score 21 days after death in the ICU is strongly associated with post-ICU burden in the bereaved relatives. The CAESAR score should prove a useful primary endpoint in trials of interventions to improve relatives' well-being.

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