Post intensive care burden on family and healthcare unit: a prospective observational study

Caring for intensive care unit (ICU) survivors is challenging. We aimed to evaluate the financial, physical and psychological burden on the families of ICU survivors, and on the healthcare system for their follow up. Adult ICU survivors with ≥ 7 days’ ICU stay and Cerebral Performance Category Scale (CPCS) Score ≤ 4, and their primary informal caregivers (PIC) were included prospectively, after Institutional ethics clearance and PIC consent; follow up was for 2 months. The outcomes included: (a) Financial burden from an ‘expenditure chart’ maintained by the PIC, termed post-discharge 2-month expenditure (PD2ME) in INR (Indian rupees). (b) Unhealthy days (UHD) assessed using the CDC Health Related Quality of Life − 14 (HRQoL-14) questionnaire. (c) Burden on healthcare system using the ‘Man-time index’ (MTI), based on the time required during follow up. The association of the functional status of the survivors at discharge with these outcomes were analysed. Data is reported in median (interquartile range, IQR). Eighty-six survivors of age 34 (25-53.5) years, 54% (47) males, sequential organ failure assessment (SOFA) score 6 (4–8) were included. Length of ICU stay was 31 (19–50) days; discharge CPCS score was 3 (2–3). Thirty-six (41.8%), 17 (19.7%) and 33 (38.5%) had 0, 1 and > 1 indwellings at discharge; 21 (24.4%) had tracheostomy tube (TT). The PD2ME was INR 41,200 (INR21,700 − 60,200). Medication and logistic cost were incurred most frequently [in 84 (97.7%) and 82 (95.3%) respectively]. Eighty-five PIC (98.8%) reported 17 (10-24.7) UHD; poor physical and mental health were equally prevalent [52 (60.4%) and 51 (59.3%) PIC]. The median MTI per survivor was 50 (30-167.5) man-minutes. Based on discharge neurological status, MTI was significantly higher in survivors with CPCS score 3–4 than with CPCS score 1–2 (115 vs. 40 man-minutes respectively; p < 0.001). PD2ME [INR 23,100, 44,300 and 55,500 respectively], UHD [10, 20 and 24 days respectively] and MTI [37.5, 50 and 150 man-minutes respectively] progressively increased with 0, 1 and > 1 indwellings (all p < 0.001) at discharge. Similarly, all outcomes were worse in those discharged with TT. The care and follow up of the ICU survivor impose substantial financial, psychological and healthcare burden. These are associated with the functional status of survivors at discharge.