Access to and perceived value of post-ICU follow-up: an international cross-sectional survey of ICU professionals and adult critical illness survivors - 26/08/26
, Susannah Leaver c, Kristina Fuest d, Victoria Metaxa e, Guy François f, Bernard Lambermont a, Stefan J. Schaller g, h, Richard Rezar i, Margo M.C. van Mol j, Michael Beil k
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Highlights |
• | Access to information about post-intensive care syndrome (PICS) and to post-ICU follow-up remains inconsistent, with marked international heterogeneity, despite strong interest among ICU survivors and the perceived usefulness of such information and services. |
• | Patients primarily value relational and informational aspects of post-ICU follow-up, such as being listened to and gaining a better understanding of their ICU experience, rather than symptom resolution alone. This highlights a gap between patient- and clinician-centred outcomes. |
• | There is a clear need for structured guidance, training, and standardisation, with scientific societies playing a pivotal role in supporting education, guideline development, and coordinated ICU survivorship care. |
Abstract |
Background |
Post-intensive care syndrome (PICS) is a frequent and debilitating consequence of critical illness, yet access to structured post-ICU follow-up remains inconsistent.
Methods |
We conducted an ESICM-endorsed, international, cross-sectional online survey using two complementary questionnaires to explore the perspectives of ICU healthcare professionals (ICU-HP) and adult ICU survivors (ICU-S), disseminated through ESICM communication channels, professional networks, patient associations, and social media. Both surveys explored post-ICU follow-up practices, access to care, perceived benefits, and unmet needs.
Results |
A total of 276 ICU-HP from 242 hospitals across 43 countries and 106 ICU-S from 47 ICUs across 6 countries participated in the survey. Post-ICU follow-up was reported to be available by 45% of ICUs and accessed by 58.5% of patients. Among ICU survivors, 55.7% reported having received information about PICS, while 86.2% of those not informed indicated it would have been useful. Follow-up practices showed marked heterogeneity in patient selection, timing, content, and duration. Among patients who had access to post-ICU follow-up, screening of all three core PICS domains (physical, cognitive and psychological functions) was performed in only 40.7% of cases. Nevertheless, 56.4% reported feeling better following follow-up, mainly due to perceived support and improved understanding of their condition. Among ICU-HPs offering follow-up, 55.1% reported that this activity had led to changes in clinical practice within their ICU, and 97.4% expressed intent to continue their programs although limited training opportunities and a lack of formal guidance were reported by a substantial proportion of respondents.
Conclusions |
This survey demonstrates inconsistent access to post-ICU follow-up and information about PICS, despite the perceived value of post-ICU follow-up among both ICU-S and ICU-HP. Improving post-ICU care will require dedicated training and structured guidelines, highlighting the key role of scientific societies in ICU survivorship care.
Le texte complet de cet article est disponible en PDF.Keywords : Post-intensive care syndrome, follow-up, survivorship, patient-centred care, health service research
Abbreviations : CHERRIES, ESICM, ESPEN, GP, GPICS, HP, HSRO, ICU, NICE, PICS, PICS-F, S
Plan
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