title: Evaluation of a health and social care rehabilitation programme for survivors of critical illness and their families
Creators: name: Henderson, Philip Gerard
Publisher: name: University of Glasgow
Year: 2024

description: Post-Intensive Care Syndrome (PICS) has been defined as new or worsening physical impairments, mental health problems, and/or cognitive dysfunction after a critical illness. PICS-Family (PICS-F) has been described as new or worsening mental health problems in the relatives and close friends of patients who have experienced intensive care. The Intensive Care Syndrome: Promoting Independence and Return to Employment (InS:PIRE) programme is a complex outpatient health and social care intervention designed to address the common problems that encompass PICS and PICS-F. The InS:PIRE intervention is delivered by a complex Multidisciplinary Team (MDT), with patients and caregivers treated together in groups through repeated visits, usually over five weeks. The intervention is designed for both patients and their caregivers and incorporates peer support throughout the programme. This thesis has taken advantage of an InS:PIRE ‘scaling-up’ project during which the programme was being expanded from the original single InS:PIRE site to a further five sites across Scotland.

Before evaluating the effectiveness of InS:PIRE, a scoping review identified that there were no definitive treatments for PICS or PICS-F. Furthermore, there was a paucity of literature on the effects of complex outpatient interventions for critical illness survivors and their families. Having identified a gap, this thesis conducted three studies of the effectiveness and adaptability of the InS:PIRE intervention.

The first study was a multicentre evaluation that compared the Health-Related Quality of Life (HRQoL) of 137 patient participants who attended the InS:PIRE programme (intervention cohort) with 115 patient participants who were treated in hospitals that had no intensive care follow-up service (usual care cohort). After covariate adjustment, HRQoL, measured using the EQ-5D Health Utility Score, was statistically significantly higher in the intervention cohort compared to the usual care cohort (0.12, 95% CI: 0.04 to 0.20, p=0.01) one year after hospital discharge. Self-efficacy was also significantly higher and there were 62% lower odds of screening positively for depression (odds ratio: 0.38, 95% CI: 0.19 to 0.76, p=0.01). There was no difference in the odds of anxiety. Overall, attendance at InS:PIRE appeared to be associated with better HRQoL and emotional outcomes for patients.

The second study compared 81 caregiver participants who had attended the InS:PIRE programme (intervention cohort) with 89 caregivers recruited in parallel with the usual care cohort, as described above for the patient outcomes. After covariate adjustment, the intervention cohort had lower odds of screening positively for anxiety (odds ratio: 0.42, 95% CI: 0.20 to 0.89, p=0.02), caregiver strain (odds ratio: 0.39, 95% CI: 0.16 to 0.98, p=0.04), and clinically significant insomnia (odds ratio: 0.36, 95% CI: 0.17 to 0.77, p&lt;0.01). There was no significant difference in the odds of depression between these cohorts. The intervention was therefore associated with a reduced burden on the caregiver from the problems relating to PICS-F.

The final study assessed the implementation of the InS:PIRE intervention at a specialist Cardiothoracic Intensive Care Unit (CICU). This study did not have a usual care cohort and as such was conducted as a quality improvement project. Over the course of five cohorts, 27 patients and 23 caregivers participated in InS:PIRE. Over 90% of patients had problems in at least one HRQoL domain and 57% of caregivers had features of anxiety, while 35% had depression. The InS:PIRE programme adapted well to the needs of this specialist quaternary referral CICU. The intervention appeared feasible, with 96% of participants completing the programme. In conclusion, the InS:PIRE intervention appeared to identify and address unmet health and social care needs for this group of patients and their caregivers; it was well tolerated and appeared to offer significant utility for this population.

This thesis describes in detail the literature relating to PICS, PICS-F, and specifically through a scoping review, outlines the outpatient interventions that have been described in the literature. Following on from this, the thesis documents the evolution and conduct of the InS:PIRE intervention and the framework under which the three studies were conducted. Finally, the detailed results of all three studies are described and the importance of this work to the literature is discussed.