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.
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Acknowledgments
These contributors participated to the study: Michel Badet, Chambéry Hospital, Chambéry, France; Julie Carr, Saint Eloi University Hospital, Montpellier, France; Sophie Cayot-Constantin, Estaing University Hospital, Clermont Ferrand, France; Vincent Das, André Grégoire Hospital, Montreuil, France; Fabienne Fieux, Saint Louis University Hospital, Paris, France; Emmanuelle Hammad, Hôpital Nord University Hospital, Marseille, France; Mercé Jourdain, Roger Salengro University Hospital, Lille, France; Véronique Leray, La Croix Rousse Hospital, Lyon, France; Djamel Mokart, Institut Paoli Calmettes, Marseille, France; Sami Hreich Hôpital Nord University Hospital, Marseille, France; Michel Ramakers, Saint Lô Hospital, Saint Lô, France; Jean-Michel Robert, Edouard Herriot University Hospital, Lyon, France; Antoine Roquilly, Hôtel Dieu University Hospital, Nantes, France.
Supported by a Grant from the French Ministry of Health (PHRC 10 104). Medical Intensive Care Unit, Hôpital Saint-Louis, ECSTRA team, Biostatistics and clinical epidemiology, UMR 1153 (Center of Epidemiology and Biostatistics Sorbonne Paris Cité, CRESS), INSERM, Paris Diderot Sorbonne University, Paris, France.
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Take-home message: A 15-item questionnaire (CAESAR) proved reliable for assessing the experience of relatives with the dying and death of a loved one in the intensive care unit. This instrument should prove useful as the primary endpoint in trials of interventions designed to improve family care.
The complete list of contributors to this study is detailed in the Electronic Supplementary Material 2.
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Kentish-Barnes, N., Seegers, V., Legriel, S. et al. CAESAR: a new tool to assess relatives’ experience of dying and death in the ICU. Intensive Care Med 42, 995–1002 (2016). https://doi.org/10.1007/s00134-016-4260-4
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DOI: https://doi.org/10.1007/s00134-016-4260-4