Long-Term Outcomes and Health-Related Quality of Life in Post-ICU Patients: a Mixed Methods Study

Student thesis: Doctoral ThesisDoctor of Philosophy

Abstract

Background: The management of patients in Intensive Care Units (ICU) remains complex, however advances in critical care medicine have resulted in a growing population of survivors of critical illness. There is increasing evidence to demonstrate the long-term burden associated with critical illness and the ICU experience, and the term Post-Intensive Care Syndrome (PICS) has emerged to describe the domains of physical, cognitive, and psychological impairments that occur after ICU discharge. The recovery for these patients after ICU is challenging and the literature outlining causes and predictors of PICS outcomes is inconclusive. Further research is needed to understand the long-term outcomes and health related quality of life (HRQoL) of critically ill patients and to explore the predictors that, if addressed, could optimize patients’ recovery. No research studies have been conducted in Saudi Arabia regarding long-term outcomes and HRQoL of post-ICU patients.

Aim: The aim of this thesis was to examine the long-term outcomes and HRQoL of post-ICU patients in Saudi Arabia using a mixed methods approach.

Methods: Phase I involved examining long-term outcomes and HRQoL in the post-ICU population in the literature by conducting a systematic review. A conceptual framework was developed based on previously proposed frameworks and the systematic review conducted in Phase I. In Phase II, the long-term outcomes and HRQoL of patients in Saudi Arabia were investigated by conducting a prospective cohort study (Life-ICUS study). Incidence of and predictors for PICS were examined. In Phase III, a qualitative approach was undertaken to explore the lived experiences of post-ICU patients in this cohort (Life-ICUS-Q study).

Results: A review of 13 studies identified key characteristics of long-term outcomes (physical, cognitive, and psychological) and HRQoL in post-ICU patients highlighting the main predictors for PICS. In-ICU factors such as ICU delirium, ICU length of stay, mechanical ventilation, and ICU diagnosis were found to be key predictors for PICS. Factors related to patients’ characteristics such as younger age, female gender, unemployment, education, and pre-existing diseases were found to be associated with PICS as well. The Life-ICUS experiment studied 94 patients from the time of their ICU admission to 3 months after discharge.
Outcome data were examined at the time of discharge and at 3 months follow-up. At discharge, a large proportion of patients demonstrated PICS impairments (n=63, 93%). At 3 months follow-up all domains of PICS (physical, cognitive, psychological) and HRQoL significantly improved (in all domains and HRQoL p<0.001). However, a large proportion of patients (n=44, 74%) demonstrated sustained mild cognitive impairments at 3-months follow up. Non-modifiable and modifiable predictors for PICS were identified. These included younger age, female gender, education (with higher levels having a protective effect), ICU diagnosis, and pre-existing cognitive impairments. In the Life-ICUS-Q study, a total of six patients were interviewed. They perceived their recovery journey challenging with predominantly physical and psychological difficulties in the immediate post-ICU discharge period (first few days after ICU discharge). However, they perceived improvements in the long-term recovery period (several weeks to months after ICU discharge), and they related their psychological wellness to the improvements in their physical status. Several factors played a role in the trajectory of the long-term recovery of patients, and these included patients’ coping, resilience, faith, gratitude, and the presence of healthcare providers and family.

Discussion: This thesis has described the long-term outcomes and HRQoL in ICU patients and the patients’ experiences throughout their recovery journey. The process has provided an important first insight into the understanding of PICS in the Saudi context. This study confirmed that PICS is a common phenomenon that affects patients in different settings and cultures. A large proportion of the patients in the Life-ICUS study experienced PICS impairments. Compared to existing literature, however, Life-ICUS cohort experienced less physical and psychological impairments but higher incidents of cognitive disabilities, especially in executive functioning. Several novel findings were conferred in this study such as higher level of education having a protective role in the physical impairments, and younger patients being more predisposed to anxiety and depression. Despite acquiring PICS difficulties, patients scored their HRQoL highly and their HRQoL improved significantly over time; a finding which was also novel in this study. In the qualitative Life-ICUS-Q study, the accounts covering the entire trajectory from the time patients were in the ICU until several months after discharge depicted a challenging recovery process especially in the immediate post-ICU period. Physical and psychological aspects of PICS were the most debilitating during this period. In the long-term post-ICU period, a strong positive outlook toward the recovery from critical illness was adopted, which was a remarkably novel finding in this study. Several personal attributes, such as resilience and a sense of gratitude, and personal efforts, such as self-care and activation of coping mechanisms, were found to be positive factors that facilitated better long-term outcomes. From a cultural perspective, the values and teachings of Islamic faith and the presence of a social and family environment played an important role in the successful navigation of the recovery phase.

Conclusions: This thesis has presented the investigation of the long-term outcomes and HRQoL of post-ICU patients in Saudi Arabia. A new and more comprehensive conceptual framework for PICS was proposed. Findings of this thesis have provided important insights into the outcomes and experiences of post-ICU patients in Saudi Arabia. Several recommendations have been proposed mainly for the enhancement of ICU practices, post-ICU research, and the development of post-ICU clinics. While critical illness and the ICU experience were associated with substantial recovery burden, there are opportunities to optimize outcomes of Saudi patients through in-ICU and post-ICU assessments and interventions.
Date of Award1 Oct 2024
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorGerry Lee (Supervisor) & Anne Marie Rafferty (Supervisor)

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