The needs of patients with post-intensive care syndrome: A prospective, observational study.

BACKGROUND: The needs of critical illness survivors and how best to address these are unclear. OBJECTIVES: The objective of this study was to identify critical illness survivors who had developed post-intensive care syndrome and to explore their use of community healthcare resources, the socioeconomic impact of their illness, and their self-reported unmet healthcare needs. METHODS: Patients from two intensive care units (ICUs) in Western Australia who were mechanically ventilated for 5 days or more and/or had a prolonged ICU admission were included in this prospective, observational study. Questionnaires were used to assess participants' baseline health and function before admission, which were then repeated at 1 and 3 months after ICU discharge. RESULTS: Fifty participants were enrolled. Mean Functional Activities Questionnaire scores increased from 1.8 out of 30 at baseline (95% confidence interval [CI]: 0-3.5) to 8.9 at 1 month after ICU discharge (95% CI: 6.5-11.4; P = <0.001) and 7.0 at 3 months after ICU discharge (95% CI: 4.9-9.1; P = < 0.001). Scores indicating functional dependence increased from 8% at baseline to 54% and 33% at 1 and 3 months after ICU discharge, respectively. Statistically significant declines in health-related quality of life were identified in the domains of Mobility, Personal Care, Usual Activities, and Pain/Discomfort at 1 month after ICU discharge and in Mobility, Personal Care, Usual Activities, and Anxiety/Depression at 3 months after ICU discharge. An increase in healthcare service use was identified after ICU discharge. Participants primarily identified mental health services as the service that they felt they would benefit from but were not accessing. Very low rates of return to work were observed, with 35% of respondents at 3 months, indicating they were experiencing financial difficulty as a result of their critical illness. CONCLUSIONS: Study participants developed impairments consistent with post-intensive care syndrome, with associated negative socioeconomic ramifications, and identified mental health as an area they need more support in.