Access to and perceived value of post-ICU follow-up: an international cross-sectional survey of ICU professionals and adult critical illness survivors.

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.