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A family information brochure and dedicated website to improve the ICU experience for patients’ relatives: an Italian multicenter before-and-after study

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Abstract

Purpose

Good communication between ICU staff and patients’ relatives may reduce the occurrence of post-traumatic stress disorder, anxiety or depression, and dissatisfaction with clinicians. An information brochure and website to meet relatives’ needs were designed to explain in technical yet simple terms what happens during and after an ICU stay, to legitimize emotions such as fear, apprehension, and suffering, and to improve cooperation with relatives without increasing staff workload. The main outcomes were improved understanding of prognosis and procedures, and decrease of relatives’ anxiety, depression, and stress symptoms.

Methods

In this prospective multicenter before-and-after study, a self-administered questionnaire was used to investigate relatives’ understanding of prognosis, treatments, and organ dysfunction, families’ satisfaction, and symptoms of anxiety, depression, and post-traumatic stress.

Results

A total of 551 relatives received questionnaires in nine Italian ICUs; 332 (60%) responded, 144 before and 179 after implementation of the brochure and website. Of the 179 relatives who responded after, 131 (73%) stated they had read the brochure and 34 (19%) reported viewing the website. The intervention was associated with increased correct understanding of the prognosis (from 69 to 84%, p = 0.04) and the therapeutic procedures (from 17 to 28%, p = 0.03). Multivariable analysis, together with non-modifiable factors (relative’s gender, education level, relationship to patient, and patient status at ICU discharge), showed the intervention to be significantly associated with a lower incidence of post-traumatic stress symptoms (Poisson coefficient = −0.29, 95% CI −0.52/−0.07). The intervention had no effect on the prevalence of symptoms of anxiety and depression.

Conclusion

An information brochure and website designed to meet relatives’ needs improved family members’ comprehension and reduced their prevalence of stress symptoms.

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Acknowledgements

The corresponding author would especially like to thank Lucetta Fontanella for her exceptional availability and intelligence in describing ICU human relationships. The authors also thank all the staff (nurses, physicians, students, and residents) of the nine participating ICUs for their essential cooperation, together with the family members who agreed to participate. We are also grateful to Massimo Antonelli of the executive board of Società Italiana di Anestesia, Analgesia, Rianimazione e Terapia Intensiva (SIAARTI), Fabrizio Moggia of the executive board of Associazione Nazionale Infermieri di Area Critica (ANIARTI), Alessandro Vergallo of the executive board of Associazione Anestesisti Rianimatori Ospedalieri Italiani—Emergenza Area Critica (AAROI-EMAC), and Adriana Paolicchi of the executive board of Società Italiana di Anestesia Rianimazione Emergenza e Dolore (SIARED) for their endorsement of the present project. The authors also thank the Section Editor (J. Randall Curtis, M.D., MPH) together with the anonymous reviewers of Intensive Care Medicine for their important suggestions that made this manuscript clearer and the message stronger. The project http://www.intensiva.it is dedicated to the memory of Milena Cavanna, who died on 14 July 1999 after a week in the ICU, and to her parents, Paola and Carlo, extraordinary examples of courage, generosity, and love. This publication endorses the Humanization to Enhance Recovery On Intensive Care Bundle (http://www.heroicbundle.org). At the time of manuscript submission, the project http://www.intensiva.it was headed by the Gruppo di Studio per la Bioetica of SIAARTI (Giovanni Mistraletti, Alberto Giannini, Luigi Riccioni, Massimo Girardis, Chiara Siddi, Ennio Fuselli, Luca Schiaffino, and Giuseppe Cornara) together with members of the executive board of ANIARTI (Gian Domenico Giusti, Mario Madeo, and Andrea Mezzetti), AAROI-EMAC (Franco Marinangeli), and SIARED (Emanuele Iacobone).

Participating centers and investigators

A.O. San Paolo-Polo Universitario, Milano: Andrea Noto, Gianfranco Cappello, Bruno Sabatelli, Giovanni Brenna, Morena Astori, and Pietro Placido. I.R.C.C.S. Ospedale Maggiore Policlinico, Milano: Luciano Gattinoni, Alessandro Protti, Francesca Pagan, Virna Berto, and Paola Roselli. A. O. Ospedale Civile di Desio (MI): Giulio Ronzoni, Eduardo Beck, and Maurizio Gaiotto. A.O. Ospedale Civile di Legnano (MI): Danilo Radrizzani, Luca Ferla, Riccardo Giudici, and Laura Merlini. I.R.C.C.S. San Matteo, Pavia: Antonio Braschi, Thekla Niebel, Marina Selvini, Sergio Cortesi, and Attilio Quaini. A.O. San Giovanni Bosco, Torino: Sergio Livigni, Giuseppe Naretto, Alessandro Deprado, and Virna Venturi degli Esposti. A.O.U. San Luigi Gonzaga, Orbassano (TO): Maurilio Festa, Lorenzo Odetto, Daniele Ferrero, Stefano Cognolato, Roberto Penso, and Roberta Vacchelli. A.O. Ospedale Cardinal Massaia, Asti: Silvano Cardellino, Anna Maria Gado, Anna Bresciani, Ivana Pozzo, Annachiara Alessio, Vanessa Clarindo Rodrigues, and Edna Biase. Nuovo Ospedale Civile Sant’Agostino Estense, Modena: Marco Rambaldi, Francesco Ponzetta, Lucilla Bavutti, Paola Martina, Beatriz Palacios, and Giancarla Bergonzini. Web design & Copywriting: Webperformance srl—http://www.webperformance.it—Alessandro Scartezzini, Gessica Malagò, Francesco Furletti, and Michele Morandini. Graphic design of the brochure: Carthusia Edizioni srl—Elisa Galli, Silvia Marelli.

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Correspondence to Giovanni Mistraletti.

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Funding

This study was funded by a grant for independent research provided by Regione Lombardia (DRL 13465 of 22 December 2010) which covered all costs. The funders had no influence over the publication of study results, this being the responsibility of the principal investigator (Giovanni Mistraletti, MD).

Conflicts of interest

All authors declare that they have no conflict of interest.

Additional information

This research project was first presented to the opening session of the SIAARTI congress in Rome, October 16, 2013. The results were then presented to the SIAARTI congress in Venice, October 24, 2014. The website http://www.intensiva.it participated in a national contest run by the newspaper Il Sole 24ore, Premio WWW 2012, winning the 1st prize in the “School and University” section.

Take-home message: Improved communication based on generalizable tools, including a brochure and website, was associated with a better understanding of prognosis and treatments being provided, without necessarily increasing the ICU staff’s workload. Post-traumatic stress symptoms in relatives seemed to be reduced with provision of information by brochure and website and were also correlated with female sex, higher education, spousal relationship, and patients’ death.

A complete list of the participating centers and investigators can be found at the end of the Acknowledgments section.

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Mistraletti, G., Umbrello, M., Mantovani, E.S. et al. A family information brochure and dedicated website to improve the ICU experience for patients’ relatives: an Italian multicenter before-and-after study. Intensive Care Med 43, 69–79 (2017). https://doi.org/10.1007/s00134-016-4592-0

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