Abstract
Introduction
The post-intensive care syndrome involves long-term physical, cognitive, and psychological impairments commonly seen after critical illness. There is limited evidence from Aotearoa/New Zealand on the prevalence and lived experience of PICS, unmet needs, or barriers to recovery. These studies explore both the long-term outcomes and experience of survivorship after critical illness.
Methods
This is a multi-methods study exploring disability, health-related quality of life, cognitive function, psychological symptoms, return-to-work, and health-care re-presentations at 4-6 weeks, 6 and 12 months after critical illness. Associative factors, recovery trajectory, and changes in mean scores over time were analysed using linear and logistic regression and linear mixed effects models. A qualitative study exploring the survivorship journey, memories of the ICU, and recovery using constructive grounded theory was also conducted.
Results
Moderate/severe disability was common at 1-month post-discharge 42% (46/110). Most improvements in disability, quality of life, cognition, and psychological symptoms occurred within the first 6 months. However, a subset continued to experience significant limitations at 12 months, and nearly a quarter of the cohort reported persistent trauma-related symptoms. Disability and cognitive dysfunction were the most common PICS impairments. The proportion of participants with multiple domain impairments (three or more) was low in prevalence overall. Predictors of moderate/severe disability at 6 months included a history of depression (OR: 2.83, 95% CI: 1.16, 7.21, p =.02) and higher pre-illness frailty scores (mean difference estimate: 3.5, 95% CI:0.71, 6.30, p =0.014). Male participants consistently reported lower disability scores than females (mean difference estimate: −6.88, 95% CI: −10.08, −3.67, p =<.001), while older participants generally reported better quality of life and lower anxiety and depression scores. Return-to-work rates were reduced across all follow-ups, and representations back to healthcare were common.
Participants described a survivorship journey through tangible phases of illness interspersed with cascading events, hazy memories and transitions. In the ICU, they framed the sequelae and complications of critical illness as synonymous with the aftershocks of an earthquake. Early recovery was characterised by work needed to recover, with dependence on whānau/family and a sense of abandonment by health services. Later stages involved adaptation and regeneration as physical function returned. Whānau/family and rehabilitation services supported recovery, while inadequate psychological support, insufficient information, and lack of reassurance acted as key barriers.
Conclusion
Critical illness survivorship is a complex, all-encompassing process. Disability, cognitive impairment, and psychological issues are commonly encountered and may persist up to 12 months afterwards. Participants have little support once home and are reliant on whānau and friends to get them through the work of recovery. ICU follow-up post critical illness should be provided to address the information, reassurance, oversight, and psychological support gaps that exist for survivors and their whānau once home.