Nancy Kentish-Barnes1, Valérie Seegers2,3, Stéphane Legriel4, Alain Cariou5,6, Samir Jaber7,8, Jean-Yves Lefrant9,10, Bernard Floccard11, Anne Renault12, Isabelle Vinatier13, Armelle Mathonnet14, Danielle Reuter1, Olivier Guisset15, Christophe Cracco16, Amélie Seguin17, Jacques Durand-Gasselin18, Béatrice Éon19, Marina Thirion20, Jean-Philippe Rigaud21, Bénédicte Philippon-Jouve22, Laurent Argaud11,23, Renaud Chouquer24, Mélanie Adda25, Laurent Papazian25,26, Céline Dedrie27, Hugues Georges28, Eddy Lebas29, Nathalie Rolin30, Pierre-Edouard Bollaert31,32, Lucien Lecuyer33, Gérald Viquesnel17, Marc Léone25,26, Ludivine Chalumeau-Lemoine34, Zoé Cohen-Solal1, Maité Garrouste-Orgeas35, Fabienne Tamion36, Bruno Falissard2, Sylvie Chevret37,38, Elie Azoulay39,40. 1. Assistance Publique-Hôpitaux de Paris, Famiréa Research Group, Saint-Louis University Hospital, Paris, France. 2. Paris-Sud Innovation Group in Mental Health, UMR 669, INSERM, Paris-Sud University, Paris, France. 3. Data Management Research Department DRCI, Angers Hospital and SFR ICAT, University of Angers, Angers, France. 4. Versailles Hospital, Versailles, France. 5. Assistance Publique-Hôpitaux de Paris, Cochin University Hospital, Paris, France. 6. Paris Descartes University, Paris, France. 7. Saint Eloi University Hospital, Montpellier, France. 8. Montpellier 1 University, Montpellier, France. 9. Carémeau University Hospital, Nîmes, France. 10. Nîmes University, Nîmes, France. 11. Hospices Civils de Lyon, Edouard Herriot University Hospital, Lyon, France. 12. Cavale Blanche University Hospital, Brest, France. 13. Les Oudairies Hospital, La Roche Sur Yon, France. 14. Hospital de la Source, Orléans, France. 15. Saint André University Hospital, Bordeaux, France. 16. Angoulême Hospital, Angoulême, France. 17. Caen University Hospital, Caen, France. 18. Sainte Musse Hospital, Toulon, France. 19. La Timone University Hospital, Marseille, France. 20. Victor Dupouy Hospital, Argenteuil, France. 21. Dieppe Hospital, Dieppe, France. 22. Roanne Hospital, Roanne, France. 23. Lyon Est University, Lyon, France. 24. Annecy Hospital, Annecy, France. 25. Hôpital Nord University Hospital, Marseille, France. 26. Aix-Marseille University, Marseille, France. 27. Roubaix Hospital, Roubaix, France. 28. Chatilliez Hospital, Tourcoing, France. 29. Bretagne Atlantique Hospital, Vannes, France. 30. Marc Jacquet Hospital, Melun, France. 31. Nancy University Hospital, Nancy, France. 32. Lorraine University, Nancy, France. 33. Sud Francilien Hospital, Evry, France. 34. Gustave Roussy Institut, Villejuif, France. 35. Saint Joseph Hospital, Paris, France. 36. Rouen University Hospital, Rouen, France. 37. Biostatistics and Clinical Epidemiology research team, U1153, INSERM, Paris Diderot Sorbonne University, Paris, France. 38. Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis, Service de Biostatistique et Information Médicale, Paris, France. 39. Assistance Publique-Hôpitaux de Paris, Famiréa Research Group, Saint-Louis University Hospital, Paris, France. elie.azoulay@sls.aphp.fr. 40. Biostatistics and Clinical Epidemiology research team, U1153, INSERM, Paris Diderot Sorbonne University, Paris, France. elie.azoulay@sls.aphp.fr.
Abstract
PURPOSE: 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.
PURPOSE: 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.
Entities:
Keywords:
Bereavement; Complicated grief; Death; Intensive care unit; Relatives
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