Effect of an ICU diary on psychiatric disorders, quality of life, and sleep quality among adult cardiac surgical ICU survivors: a randomized controlled trial

Using an ICU diary is not useful for preventing PTSD symptoms and anxiety symptoms and preserving the health-related quality of life in the patients after 3 months of discharge from ICU.

Using an ICU diary is useful for increasing the survivor’s factual memories of ICU at 1 month post-ICU, improving sleep quality, and preventing hyperarousal symptoms at 3 months post-ICU.

With the decrease of mortality in critical care in recent decades [1], concerns are growing about long-term outcomes and quality of life in the intensive care unit (ICU) survivors. In particular, more attention has been given to psychiatric disorders such as symptoms of anxiety, depression, and post-traumatic stress disorder (PTSD). It is known that patients frequently experience memory gaps and unpleasant recall after ICU discharge [2], which are often associated with the development of mental health disorders that impact negatively on the health-related quality of life in ICU survivors [3‐5].

A large proportion of patients suffered from PTSD symptoms, with rates ranging from 15.93 to 25.69% in the first year following discharge from the ICU [6]. Given the high prevalence of these psychiatric disorders and their potential negative impacts on long-term quality of life in ICU survivors, effective interventions to preventing PTSD and promoting mental health recovery in ICU survivors are urgently needed.

Since the beginning of the year 2000 [7], the use of ICU diaries has been used as a tool to help the patients recover physically and mentally after ICU admission [7‐14]. ICU diaries filled in by ICU staff and/or family could provide patients with a factual recall of their ICU experience, which may help to fill in the memory gap and enable reconstruction of their stories of ICU experience [15]. Reading ICU diary may be a process of repetition and reinforcement of factual memory, which enables patients to distinguish factual events from hallucinations and delusions.

Although studies on the effectiveness of the use of ICU diaries on psychiatric disorders and quality of life have been published, the results still seem to be controversial. Several trials indicated that ICU diaries reduced PTSD symptoms [7, 8, 16], but results by meta-analysis showed that ICU diaries improved quality of life, decreased symptoms of anxiety and depression but not PTSD [17, 18]. An assessor-blinded, multicenter RCT in 35 French ICUs did not support ICU diaries for preventing symptoms of PTSD, anxiety, and depression [19]. A diary and a psychoeducation program reduced anxiety, depression, and PTSD symptoms 3 months after ICU discharge [7]. In a non-randomized trial, keeping an ICU diary with photos improved health-related QoL during the 3-year follow-up period after ICU [14]. Evidences of the usefulness of ICU diary seem to lack harmony. Many factors may contribute to the differences across these studies: the time of outcome assessment, instrument used, population studied, cultural context, difference of ICU diary intervention, and so on. Most research in this area has focused on general ICU or medical ICU settings and has been conducted in western countries and Europe. Few studies of ICU diary conducted in the patients undergoing cardiac surgery and intensive care unit therapy. Moreover, evidence from China is limited.

In addition, sleep disturbance is another common problem for ICU survivors including insomnia, nightmares, and poor-quality sleep [20]. Psychiatric symptoms, such as trauma-related symptoms and depressive symptoms, were associated with a higher likelihood of post-ICU sleep disturbances [21]. Sleep is crucial for rest, recovery, and well-being. No studies have yet evaluated the effects of using an ICU diary on the sleep of ICU survivors. This study was designed to examine the effects of ICU diaries on psychological outcomes, quality of life, and sleep quality among adult cardiac surgical ICU survivors in a Chinese context.

These results found that using an ICU diary is not useful for preventing PTSD symptoms, anxiety symptoms, and preserving health-related quality of life in the patients at 3 months post-ICU, while it increases the survivor’s factual memories of ICU at 1 month post-ICU, improves the sleep quality, and prevents the hyperarousal symptom at 3 months post-ICU. The results of this study are not entirely consistent with previous trials [14, 17, 19] and systematic reviews [17, 18]. Similar to a trial published on JAMA, ICU diary is not associated with symptoms of PTSD, symptoms of anxiety, and memories of ICU in ICU survivors [19]. But the results differ from the results of other studies which indicated using ICU diaries reduced symptoms of PTSD [7, 8, 16], symptoms of anxiety, depression [7] post-ICU, and improved health-related QoL during 3-year after ICU [14]. As for the effect on depression symptoms, there may need a large sample and more evidences to test due to the different results by mITT and PP analyses in the present study.

Eleven patients in the intervention group refused to read the ICU diaries, and 11 patients in the control group refused to continue the study and did not like to talk their experiences of the ICU stay. When measured shortly after ICU, a high early prevalence of PTSD symptoms may reflect acute stress disorder (ASD) rather than PTSD [6]. ASD symptoms are similar to the PTSD symptoms that occur within the first month of exposure to a traumatic event [30]. ASD may be triggered by fragmented ICU memories of traumatic or psychotic experiences [16]. These patients who had avoidance behavior such as dislike reading the diary and talking about the ICU experience might have ASD; thus, they may start avoiding any stimulus that reminds them of the traumatic event, such as ICU admission. Reading ICU diary can be stressful, yielding a negative emotional experience for some patients [19], which may result in re-traumatizing the patient. Meanwhile, there were significant differences in the characteristics of patients between responders and non-responders in the study, namely, patients who withdrew from the study had a longer length of ICU stay, duration of use of corticosteroid, use of sedatives, use of analgesics, and duration of mechanical ventilation than those who completed the trial. The use of analgesics [31] and the length of mechanical ventilation [32] were associated with PTSD. All these would imply that the patients with poor mental health were more likely to be those who declined to continue the study, refuse reading the diary, and talk about the ICU experience, leading to deflation of the effect of the diary. We were not able to tell whether they had suffered from ASD in this study. ASD is a risk factor for the development of PTSD [33]. More attention and screening of these patients for ASD symptoms, followed by proper support and treatment, is needed, given the correlation between the two disorders.

In this study, the incidence of PTSD in the control group was 21.43% at 3 months after ICU discharge, which is consistent with the newest result of meta-analysis [6]. Although the incidence of PTSD symptoms was 14.63% in the intervention group, there was no significant difference between groups. There are four possible explanations for the failure of the intervention used in this trial to prevent PTSD symptoms in patients. First, the population was specific to those who underwent selective cardiac surgery, such as heart valve replacement and coronary artery bypass grafting surgery, which was different from patients with an acute critical illness or severe trauma. Second, high risk of attrition bias and small sample size in the study may cause bias when estimating the effect of the diary. Third, the doses of ICU diary intervention and patients’ compliance with the intervention is critical. This study did not measure the number of times the patient reading the diary, which may result in the study being underpowered. Fourth, this was the first trial of ICU diary in patients after ICU discharge in mainland China. Most researches of ICU diary came from western countries and Europe. Any influence on psychological outcomes may have been masked by social and environmental factors such as social-cultural difference, setting, and character traits of the study population.

This study found the use of a diary was useful to fill the patient’s factual memories. As the results of our previous cohort study [34], some patients suffered from delusional memories of ICU at 1 week follow-up. It is known that delusional memories without recall of factual events in the ICU is a predictor of PTSD symptoms, while factual memories, even relatively unpleasant memories for real events during critical illness, may give some protection from anxiety and the development of PTSD symptoms [2]. In this way, reading ICU diaries could help the patients fill their memory gap and reconstruct their ICU stories [15], both for the patients with or without delusional memories of ICU.

Quality of life is a critical, patient-oriented long-term outcome in ICU survivors. This study found the use of ICU diaries did to preserve the quality of life in ICU survivors, which is not similar to those of other studies [14, 17, 18]. Compared with the baseline data, both groups increased the SF-36 scores at post-3 months while without a significant difference between groups post-intervention. It was reported that there was a greater improvement in the quality of life in patients with adult cardiac valve disease at 3, 6, and 12 months after surgical treatment, suggesting surgery treatment is useful to improve quality of life through improving heart function [35]. Therefore, there may indicate a process of self-healing and recovery of quality of life over time after cardiac surgery in our study.

Sleep is a basic need for human beings and recovery after critical illness. It is known that PTSD is characterized by severe sleep disturbances [36]. The significant and new finding in this study is that the use of ICU diary was associated with higher subjective sleep quality during the 3 months after ICU discharge. However, in this study, no matter before surgery and 3 months post-ICU, patients’ mean total scores of PSQI were higher 7 points, suggesting the patients suffered from poor subjective sleep quality. Thus, although in the present study, sleep quality was significantly improved by ICU diaries, this is an area which would benefit from further investigation to enhance this conclusion.

In summary, our results found that using an ICU diary is not useful for preventing PTSD symptoms, anxiety symptoms, and preserving health-related quality of life in the patients after 3 months of discharge from ICU. But the results clearly demonstrated the use of ICU diaries is useful for increasing the survivor’s factual memories of ICU at 1 month post-ICU, improving subjective sleep quality, and preventing hyperarousal symptoms at 3 months post-ICU. Our pilot study provides a reasonable basis for promoting ICU diary interventions for ICU patients. Adequately powered randomized trials should be developed to provide stronger evidence about the potential beneficial effects of ICU diaries not only on the psychiatric outcomes but also on the quality of sleep and quality of life of patients, as these are likely to be of most value to patients and may benefit from the ICU diary.