Post-intensive care syndrome perception: a look through the caregivers' prism

Abstract

The critical illness, the stay in intensive care unit (ICU) and the post-intensive care syndrome (PICS) impact the patients and their caregivers. The aim of this observational study was to compare their respective perceptions of major post-ICU troubles. Patients who survived a prolonged ICU stay were routinely invited to a standardized post-ICU follow-up program including several visits scheduled during the year after ICU discharge. Patients were invited to a face-to-face interview, accompanied by a caregiver if needed. Using the same 10-item questionnaire, patients reported their perception of their current health status while caregivers reported how they perceived the patient's current health status. A total score ranging from 0 to 100 expressed the perceived global health status. Caregivers' anxiety was assessed using the anxiety subscale of the Hospital Anxiety and Depression Scale (HADS-A). From October 2022 to December 2024, a total of 105 follow-up consultations were conducted 105 days (IQR 85-211) after ICU discharge, during which patients were accompanied by a caregiver, and both completed the questionnaires. They represented 97 different pairs. The caregivers were mostly partners (70/97, 72.2%), living in the same home (81/97, 83.5%). The total score differed between patients and relatives (p = 0.003), respectively reaching 24 (12-40) and 25 (14-50). On average, the score was 5.3 ± 16.4 points lower when reported by caregivers. Items of the questionnaire were scored similarly in 23.8-45.8% of the cases. The scores obtained at the end of the consultation (59/105) were similar (p = 0.062), unlike those obtained at the beginning (46/105) (p = 0.029). The caregivers' HADS-A did not correlate with the total scores differences but correlated with the patients total score (r_s = 0.29, p = 0.004). This study highlights that the perception of post-ICU troubles differed between ICU survivors and their caregivers. The impact of this different perception on PICS or PICS-family severity or management should be further studied.

Keywords: Post-intensive care syndrome; follow-up; perception; relatives; survivors.