The importance of caregiver outcomes after critical illness.

Family members of critically ill patients are at risk for a number of adverse psychological outcomes, including post-traumatic stress disorder, depression, anxiety and complicated grief. In 2010, a task force of the Society of Critical Care Medicine proposed a new term for this cluster of complications – post-intensive care syndrome-family1. Family caregivers are integral to the care of patients who survive critical illness. Providing this care can be detrimental to the caregiver, and caregiving has been shown to increase stress and even mortality2–4. Recently, there has been increasing awareness of the importance of improving outcomes for caregivers, the value that family-centered care may add to improving patient outcomes, and the responsibility clinicians have to recognize caregiver burden5,6. Recognition of the importance of caregiver outcomes after critical illness is growing. While some of the initial descriptions focused on bereaved family members7–9, more recent studies have explored the burden of symptoms for family members who survive critical illness. Our understanding of the emotional toll of critical illness on caregivers of patients who survive critical illness is essential. These family members are often called upon to provide post-ICU care and support for the surviving patient, a role that may be compromised if the burden is too great. In this issue of Critical Care Medicine, Haines and colleagues add to the growing body of literature with an informative systematic review of the prevalence, risk factors and trajectory of psychosocial morbidity in informal caregivers of critical care survivors10. The authors identified 14 articles which met their criteria for inclusion. They conclude that adverse psychological symptoms are experienced by a substantial portion of ICU caregivers and that these symptoms persist for some time after discharge. Depression was both the most commonly reported symptom in these papers and also the most prevalent adverse psychological symptom among caregivers. Depressive symptoms were highest during the acute phase of the patient’s illness and demonstrated some improvement over time. However, significant depressive symptoms were still present in approximately 25% of caregivers at one year, which is higher than what is seen in the general population11. The authors provide a thorough exploration of risk factors for adverse psychological outcomes, providing insights to non-modifiable characteristics that may identify individuals at risk including sex, age, and patient characteristics, as well as modifiable characteristics that may be amenable to intervention including social support, fatigue, burden, and health risk behaviors. Other important adverse psychological symptoms that were less often reported include caregiver burden, activity restriction, health related quality of life, and post-traumatic stress disorder. The authors provide a concise summary of the prevalence, time course and risk factors for each, as best they are able from the current literature. While the authors initially sought to include anxiety and stress, none of the studies included in the review reported on these outcomes. The authors acknowledge a number of weaknesses of their review, including the limited number of studies meeting criteria for inclusion, the generally low methodological quality of the studies which are mostly observational in nature, and a lack of pre-morbid assessments of psychological symptoms in most studies. Overall, they found significant heterogeneity in the included studies, both in terms of time of assessment and outcome measures, and for this reason were unable to conduct a meta-analysis. Although this review provides us with a great deal of information about the adverse consequences of critical illness for caregivers, Haines and colleagues astutely note that this review only captures the negative symptom burden experienced by caregivers, and therefore does not describe the full potential spectrum of outcomes. In addition to the more commonly reported negative symptoms, there can also be positive personal changes that occur in conjunction with or after a traumatic event such as critical illness12,13. The full spectrum of psychological responses to the trauma of critical illness14 has not been well-described. A better understanding of both the positive and negative consequences of critical illness may provide additional targets for intervention with the goal to improve outcomes for both patients and their caregivers. While this important review highlights the sizeable burden of psychological symptoms for caregivers of patients who survive critical illness, and provides the critical care community insight into the risk factors and trajectory of these adverse symptoms as experienced by caregivers, questions remain. What can we learn from the majority of caregivers who do not develop adverse psychological symptoms after critical illness? Are there protective psychosocial characteristics or modifiable components of the ICU experience (such as high-quality communication with providers) that may prevent or attenuate these negative outcomes? What role might different types of coping skills play? Given the influence that these adverse symptoms can have on the health of both caregivers and patients after critical illness, further high-quality research is needed to better inform timely and relevant interventions with the goal to improve outcomes for both caregivers and patients alike.