title: CAESAR: a new tool to assess relatives' experience of dying and death in the ICU.
abstract: OBJECTIVE
  To develop an instrument designed specifically to assess the experience of relatives of patients who die in the intensive care unit (ICU).
  
  
  METHODS
  The 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.
  
  
  RESULTS
  A 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].
  
  
  CONCLUSIONS
  The 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.
authors.affiliation: Assistance Publique-Hôpitaux de Paris, Famiréa Research Group, Saint-Louis University Hospital, Paris, France.
authors.forename: Nancy
authors.initials: N
authors.lastname: Kentish-Barnes
authors.affiliation: Paris-Sud Innovation Group in Mental Health, UMR 669, INSERM, Paris-Sud University, Paris, France.|Data Management Research Department DRCI, Angers Hospital and SFR ICAT, University of Angers, Angers, France.
authors.forename: Valérie
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authors.lastname: Seegers
authors.affiliation: Versailles Hospital, Versailles, France.
authors.forename: Stéphane
authors.initials: S
authors.lastname: Legriel
authors.affiliation: Assistance Publique-Hôpitaux de Paris, Cochin University Hospital, Paris, France.|Paris Descartes University, Paris, France.
authors.forename: Alain
authors.initials: A
authors.lastname: Cariou
authors.affiliation: Saint Eloi University Hospital, Montpellier, France.|Montpellier 1 University, Montpellier, France.
authors.forename: Samir
authors.initials: S
authors.lastname: Jaber
authors.affiliation: Carémeau University Hospital, Nîmes, France.|Nîmes University, Nîmes, France.
authors.forename: Jean-Yves
authors.initials: JY
authors.lastname: Lefrant
authors.affiliation: Hospices Civils de Lyon, Edouard Herriot University Hospital, Lyon, France.
authors.forename: Bernard
authors.initials: B
authors.lastname: Floccard
authors.affiliation: Cavale Blanche University Hospital, Brest, France.
authors.forename: Anne
authors.initials: A
authors.lastname: Renault
authors.affiliation: Les Oudairies Hospital, La Roche Sur Yon, France.
authors.forename: Isabelle
authors.initials: I
authors.lastname: Vinatier
authors.affiliation: Hospital de la Source, Orléans, France.
authors.forename: Armelle
authors.initials: A
authors.lastname: Mathonnet
authors.affiliation: Assistance Publique-Hôpitaux de Paris, Famiréa Research Group, Saint-Louis University Hospital, Paris, France.
authors.forename: Danielle
authors.initials: D
authors.lastname: Reuter
authors.affiliation: Saint André University Hospital, Bordeaux, France.
authors.forename: Olivier
authors.initials: O
authors.lastname: Guisset
authors.affiliation: Angoulême Hospital, Angoulême, France.
authors.forename: Christophe
authors.initials: C
authors.lastname: Cracco
authors.affiliation: Caen University Hospital, Caen, France.
authors.forename: Amélie
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authors.affiliation: Sainte Musse Hospital, Toulon, France.
authors.forename: Jacques
authors.initials: J
authors.lastname: Durand-Gasselin
authors.affiliation: La Timone University Hospital, Marseille, France.
authors.forename: Béatrice
authors.initials: B
authors.lastname: Éon
authors.affiliation: Victor Dupouy Hospital, Argenteuil, France.
authors.forename: Marina
authors.initials: M
authors.lastname: Thirion
authors.affiliation: Dieppe Hospital, Dieppe, France.
authors.forename: Jean-Philippe
authors.initials: JP
authors.lastname: Rigaud
authors.affiliation: Roanne Hospital, Roanne, France.
authors.forename: Bénédicte
authors.initials: B
authors.lastname: Philippon-Jouve
authors.affiliation: Hospices Civils de Lyon, Edouard Herriot University Hospital, Lyon, France.|Lyon Est University, Lyon, France.
authors.forename: Laurent
authors.initials: L
authors.lastname: Argaud
authors.affiliation: Annecy Hospital, Annecy, France.
authors.forename: Renaud
authors.initials: R
authors.lastname: Chouquer
authors.affiliation: Hôpital Nord University Hospital, Marseille, France.
authors.forename: Mélanie
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authors.affiliation: Hôpital Nord University Hospital, Marseille, France.|Aix-Marseille University, Marseille, France.
authors.forename: Laurent
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authors.lastname: Papazian
authors.affiliation: Roubaix Hospital, Roubaix, France.
authors.forename: Céline
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authors.lastname: Dedrie
authors.affiliation: Chatilliez Hospital, Tourcoing, France.
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authors.initials: H
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authors.affiliation: Bretagne Atlantique Hospital, Vannes, France.
authors.forename: Eddy
authors.initials: E
authors.lastname: Lebas
authors.affiliation: Marc Jacquet Hospital, Melun, France.
authors.forename: Nathalie
authors.initials: N
authors.lastname: Rolin
authors.affiliation: Nancy University Hospital, Nancy, France.|Lorraine University, Nancy, France.
authors.forename: Pierre-Edouard
authors.initials: PE
authors.lastname: Bollaert
authors.affiliation: Sud Francilien Hospital, Evry, France.
authors.forename: Lucien
authors.initials: L
authors.lastname: Lecuyer
authors.affiliation: Caen University Hospital, Caen, France.
authors.forename: Gérald
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authors.lastname: Viquesnel
authors.affiliation: Hôpital Nord University Hospital, Marseille, France.|Aix-Marseille University, Marseille, France.
authors.forename: Marc
authors.initials: M
authors.lastname: Léone
authors.affiliation: Gustave Roussy Institut, Villejuif, France.
authors.forename: Ludivine
authors.initials: L
authors.lastname: Chalumeau-Lemoine
authors.affiliation: Assistance Publique-Hôpitaux de Paris, Famiréa Research Group, Saint-Louis University Hospital, Paris, France.
authors.forename: Zoé
authors.initials: Z
authors.lastname: Cohen-Solal
authors.affiliation: Saint Joseph Hospital, Paris, France.
authors.forename: Maité
authors.initials: M
authors.lastname: Garrouste-Orgeas
authors.affiliation: Rouen University Hospital, Rouen, France.
authors.forename: Fabienne
authors.initials: F
authors.lastname: Tamion
authors.affiliation: Paris-Sud Innovation Group in Mental Health, UMR 669, INSERM, Paris-Sud University, Paris, France.
authors.forename: Bruno
authors.initials: B
authors.lastname: Falissard
authors.affiliation: Biostatistics and Clinical Epidemiology research team, U1153, INSERM, Paris Diderot Sorbonne University, Paris, France.|Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis, Service de Biostatistique et Information Médicale, Paris, France.
authors.forename: Sylvie
authors.initials: S
authors.lastname: Chevret
authors.affiliation: Assistance Publique-Hôpitaux de Paris, Famiréa Research Group, Saint-Louis University Hospital, Paris, France. elie.azoulay@sls.aphp.fr.|Biostatistics and Clinical Epidemiology research team, U1153, INSERM, Paris Diderot Sorbonne University, Paris, France. elie.azoulay@sls.aphp.fr.
authors.forename: Elie
authors.initials: E
authors.lastname: Azoulay
mesh_terms: D001007:Anxiety / Q000523:psychology; D001293:Attitude to Death; D003657:Decision Making; D003863:Depression / Q000523:psychology; D005190:Family / Q000523:psychology*; D005260:Female; D006117:Grief; D006801:Humans; D007362:Intensive Care Units; D007902:Length of Stay / Q000706:statistics & numerical data; D008297:Male; D011446:Prospective Studies; D036301:Qualitative Research; D011795:Surveys and Questionnaires / Q000592:standards*; D013997:Time Factors
keywords: Bereavement; Complicated grief; Death; Intensive care unit; Relatives