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The Effect of ICU Diaries on Psychological Outcomes and Quality of Life of Survivors of Critical Illness and Their Relatives

A Systematic Review and Meta-Analysis

McIlroy, Philippa A., MBBS, BPhty (Hons 1)1,2; King, Rebecca S., MD, GradCertClinEd, Bed1,3; Garrouste-Orgeas, Maité, MD4,5; Tabah, Alexis, MD, FCICM1,6; Ramanan, Mahesh, MBBS, FCICM1,7,8

doi: 10.1097/CCM.0000000000003547
Review Articles

Objectives: To evaluate the effect of ICU diaries on posttraumatic stress disorder symptoms in ICU survivors and their relatives. Secondary objectives were to determine the effect on anxiety, depression, and health-related quality of life in patients and their relatives.

Data Sources: We searched online databases, trial registries, and references of relevant articles.

Study Selection: Studies were included if there was an ICU diary intervention group which was compared with a group without a diary.

Data Extraction: Titles, abstracts, and full-text articles were reviewed independently by two authors. Data was abstracted using a structured template.

Data Synthesis: Our search identified 1,790 articles and retained eight studies for inclusion in the analysis. Pooled results found no significant reduction in patients’ posttraumatic stress disorder symptoms with ICU diaries (risk ratio, 0.75 [0.3–1.73]; p = 0.5; n = 3 studies); however, there was a significant improvement in patients’ anxiety (risk ratio, 0.32 [0.12, 0.86]; p = 0.02; n = 2 studies) and depression (risk ratio, 0.39 [0.17–0.87]; p = 0.02; n = 2 studies) symptoms. Two studies reported significant improvement in posttraumatic stress disorder symptoms of relatives of ICU survivors; however, these results could not be pooled due to reporting differences. One study reported no significant improvement in either anxiety (risk ratio, 0.94; 95% [0.66–1.33]; p = 0.72) or depression (risk ratio, 0.98; 95% [0.5–1.9]; p = 0.95) in relatives. There was a significant improvement in health-related quality of life of patients with a mean increase in the Short Form-36 general health score by 11.46 (95% CI, 5.87–17.05; p ≤ 0.0001; n = 2 studies). No studies addressed health-related quality of life of relatives.

Conclusions: ICU diaries decrease anxiety and depression and improve health-related quality of life, but not posttraumatic stress disorder among ICU survivors and may result in less posttraumatic stress disorder among relatives of ICU patients. Multicenter trials with larger sample sizes are necessary to confirm these findings.

1Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia.

2Department of Intensive Care Medicine, Royal Brisbane and Women’s Hospital, Brisbane, QLD, Australia.

3Department of Anaesthesia, Rockhampton Base Hospital, Rockhampton, QLD, Australia.

4Medical Unit French-British Hospital Institute, Levallois-Perret, France.

5IAME, Decision Sciences in Infectious Diseases, Control and Care UMR 1137, University Paris Diderot, Sorbonne Paris Cité, France.

6Intensive Care Unit, Redcliffe and Caboolture Hospitals, Brisbane, QLD, Australia.

7Intensive Care Unit, Redcliffe, Caboolture, and The Prince Charles Hospitals, Brisbane, QLD, Australia.

8The George Institute for Global Health, Sydney, NSW, Australia.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s website (http://journals.lww.com/ccmjournal).

The authors have disclosed that they do not have any potential conflicts of interest.

For information regarding this article, E-mail: pipmcilroy@gmail.com

The mortality rate for patients with critical illness necessitating ICU admission has been declining (1 , 2) with a commensurate increase in the number of ICU survivors (3). As a result, the long-term sequelae of critical illness, including psychological, cognitive, and physical effects, are becoming more apparent. The term postintensive care syndrome (PICS) has been coined to refer to the broad range of symptoms that patients can experience after surviving an episode of critical illness (4). The psychological domain of PICS includes posttraumatic stress disorder (PTSD), depression, anxiety, and acute stress reactions. Symptoms of PTSD occur in one of five patients in the first 12 months post-ICU and are associated with worse health-related quality of life (HRQoL) (5–7). Further, up to one-third of ICU survivors report symptoms of anxiety (8) and depression (9). Family members and caregivers of ICU patients also report PTSD symptoms related to their loved ones’ ICU admission (10 , 11).

The development of PTSD after intensive care admission appears to have many contributing factors, one of which is memory disturbance (6). Patients with long stays in ICU often have lack of recall of events, and many suffer from delusions and hallucinations (12 , 13). These delusional memories of the ICU experience have been associated with the development of PTSD in ICU survivors (6 , 12 , 14), and thus are a potential focus for intervention.

Patient diaries are an intervention that may help ICU survivors and their families or caregivers in their recovery after critical illness. These ICU diaries are typically kept at the patient bedside and serve as a record of the ICU admission including the events leading to the admission, the patient’s daily status, as well as day-to-day procedures or treatments, and visitors. They are usually written by hospital staff, but may also include patient and family input, and sometimes include photos. The emphasis is on the use of plain, everyday language rather than technical or medical jargon (15). The aim of the diary is generally to provide a clear narrative of the sequence of events throughout the admission. It has been theorized that these diaries may help ICU survivors fill gaps in their memory (16), come to terms with their illness, and “diminish the impact or dominance of imagined occurrences and hallucination” (17), and thereby affect the psychological sequelae of PICS.

Although this intervention is potentially associated with benefits, available research is mostly confounded by small trials, uncontrolled reports or qualitative studies. ICU diaries have been the subject of several reviews already (15 , 17 , 18); however, as yet none have applied statistical analysis to all available research including both randomized controlled trials (RCTs) and cohort studies. A systematic review specifically looking at the effects of diaries in PICS including all available research was required to guide practice and future research.

The primary aim of this systematic review and meta-analysis was to determine whether the use of ICU diaries, compared with no diaries, reduced the rate of PTSD symptoms among ICU survivors and their families. Secondary objectives were to determine whether the use of patient diaries, compared with no diaries, reduced anxiety and depression symptoms, and improved HRQoL among ICU survivors and their family members.

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METHODS

Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Guidelines (19) were used in the preparation of this review. The protocol for our study was prospectively published on International Prospective Register of Systematic Reviews (PROSPERO) (Centre for Reviews and Dissemination 42017082479).

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Search Strategy

Two authors (P.A.M., R.S.K) independently searched the online databases PubMed, Embase, PsycINFO, and the Cochrane Central Register of Controlled Trials in December 2017 using Medical Subject Headings with search terms aiming to capture those publications which contained variations of “intensive care,” “PTSD/anxiety/depression/quality of life,” and “diary.” Full search strategies can be found in the supplemental data (Supplemental Digital Content 1, http://links.lww.com/CCM/E178). Publication alerts were set to capture relevant newly published studies. This search was supplemented by reviewing all references of relevant articles, consulting with leaders in the field and by searching clinical trials registries including the European Union Clinical Trials Register, ClinicalTrials.gov, and Australia New Zealand Clinical Trials Register. Reasons for exclusion were recorded. Disputes were resolved by discussion or review by a third author (M.R.).

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Study Selection

Articles were included if they were original research where an ICU diary intervention group was compared with a group without diaries. RCTs, prospective or retrospective cohort, before-and-after, and case control studies were all included. We included all patients admitted to an ICU for more than 48 hours and their family members, regardless of age, illness severity, or admission category (i.e., medical or surgical). Studies were excluded if they were review articles, commentaries, if there was no control group, or if the patient group was not reflective of the target population (e.g., ICU length of stay < 48 hr). Studies were also excluded if their abstract or study was not fully published in the English language.

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Data Abstraction

A structured template was used for the extraction of data from the included studies. Data collected included study location, publication year, hospital and patient demographics (including preexisting psychological conditions), timing of the diary intervention, length and method of follow-up, and the study-specific outcomes assessed. These data was independently extracted by two authors and compared for concordance.

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Risk of Bias

Structured tools were used to assess the methodological quality of included studies. This included a modified version of the “Newcastle-Ottawa Quality Assessment Scale” (20) for cohort studies and the “Cochrane Risk of Bias Tool” (21) for included RCTs. Two authors (P.A.M., R.S.K.) independently assessed the risk of bias of the included studies with discrepancies resolved by blinded independent evaluation by a third author (A.T.).

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Statistical Analysis

The data from individual studies were converted to dichotomous outcomes where possible to facilitate pooling of results when different outcome measures were used between studies. Risk ratio (RR) and mean difference were used as the measures of effect for dichotomous and continuous outcomes, respectively. 95% CIs were calculated. Data were pooled using inverse variance weighting in random effects models. The Cochrane-Mantel-Haenszel chi-square test statistic was calculated to assess statistical significance. A p value of less than 0.05 was considered significant. We constructed forest plots to inspect for heterogeneity. The Cochrane Q test and I2 test were performed to objectively assess heterogeneity. Funnel plots and Egger test were used to test for evidence of publication bias. Data analysis was performed using Review Manager 5.3 (22) and Stata 13.0 (23).

Due to the small number of studies eventually included, and the heterogeneity of methods and reporting, some challenges were encountered in pooling the results. For several comparisons, including PTSD in relatives, and anxiety and depression in patients, not all studies which reported these outcomes could be included in the meta-analysis. It was not possible to dichotomize continuous scores such as the Hospital Anxiety and Depression Scale (HADS) using published data. In these instances, the pooled results and the results of the studies which could not be pooled are presented separately.

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RESULTS

We identified 1,790 individual titles and abstracts for screening. Fourteen articles were selected for full text review of which seven satisfied all inclusion and exclusion criteria. An additional study was included following search of references, bringing the total number of included studies to eight. Of those excluded, one was an ongoing trial (24), one had no follow-up beyond the ICU stay (25), three had no control group (26–28), one had no original data (29), and in one study the patients included were not the target population (30). See Supplemental Table 4 (Supplemental Digital Content 1, http://links.lww.com/CCM/E178) for details of excluded studies. Figure 1 outlines the flowchart of the search.

Figure 1

Figure 1

Of the eight included trials, three were RCTs (31–33), with the remaining five being observational, cohort or time-series design (34–38). Characteristics of included studies are summarized in Table 1, with further information available in Supplementary Table 1 (Supplemental Digital Content 1, http://links.lww.com/CCM/E178).

TABLE 1

TABLE 1

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Overview of Methodological Quality

Risk of Bias was assessed using Cochrane Risk of Bias Tool for RCTs, and a modified Newcastle-Ottawa Scale for cohort studies. Two of the RCTs were assessed as “low” risk for six out of seven categories (31 , 32) with the third (33) scoring “unclear” or “high” risk for six out of seven categories. One of the cohort studies (35) received eight out of nine stars (indicating low risk), with the remainder scoring five or six out of nine. The full results of risk of bias assessment are presented in Supplementary Tables 2 and 3 (Supplemental Digital Content 1, http://links.lww.com/CCM/E178).

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Diaries

With the exception of Svenningsen et al (36), all included studies provided at least a brief description of the intervention. In all studies, guidelines were provided to staff to assist in standardizing entries. A summary of patients’ illness and reasons leading to admission was usually included. Two studies (35 , 37) also reported including a list and brief explanation of commonly used medical terms and equipment. Common themes included providing a daily update and a focus on the use of everyday language.

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Outcomes

PTSD.

Patients:

Three studies with a total of 452 patients investigated the effect of ICU diaries on PTSD symptoms (31 , 35 , 37). Garrouste-Orgeas et al (35) assessed PTSD symptoms according to Impact of Event Scale-Revised (39) with a score of greater than 22 defining PTSD. Glimelius Petersson et al (37) and Jones et al (31) both used posttraumatic stress syndrome (PTSS)–14 (40) to assess PTSD symptoms, using a cutoff greater than 45 to define PTSD. Garrouste-Orgeas et al (35) and Jones et al (31) both reported reduction in PTSD with ICU diaries. Glimelius Petersson et al (37) reported increased PTSD in those who received diaries; however, there were significant baseline differences between the two groups, with the patients receiving diaries having a significantly longer duration of mechanical ventilation and ICU length of stay than the control group, which is likely to have introduced bias. Overall, there was no statistically significantly reduction in PTSD with diaries, with a pooled RR 0.75 (95% CI, 0.3–1.73; p = 0.5) (Fig. 2). There was significant heterogeneity for this outcome (p = 0.05; I2 = 66%).

Figure 2

Figure 2

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Relatives:

Two studies (32 , 35) (n = 173) reported significant improvement in PTSD symptoms of relatives of ICU survivors with the use of ICU diaries. Jones et al (32) reported mean PTSS-14 scores decreased (indicating improvement) from their baseline by 5 points with ICU diaries, compared with controls where mean scores actually increased by 5 (Mann-Whitney U test p = 0.03). Garrouste-Orgeas et al (35) reported fewer PTSD symptoms in those whose relatives received a diary RR 0.43 (95% CI, 0.27–0.68; p = 0.0004). Due to differences in reporting, these results could not be pooled (Supplementary Fig. 3, Supplemental Digital Content 1, http://links.lww.com/CCM/E178).

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Anxiety and Depression.

Patients:

Three studies (33 , 35 , 38) measured anxiety and depression using the HADS (41). Anxiety and depression were dichotomized in two studies (33 , 35) (n = 88) using HADS score greater than or equal to 8 for defining anxiety or depression in the respective subscales. Significant reductions were observed in both anxiety (RR, 0.32; 95% CI, 0.12–0.86; p = 0.02) and depression scores (RR, 0.39; 95% CI, 0.17–0.87; p = 0.02) of these pooled results (Fig. 3). Fukuda et al (38) also reported a significant mean improvement in HADS scores for both anxiety (7.1 ± 3.8 to 5.7 ± 2.7; p = 0.011) and depression (8.6 ± 5.0 to 7.2 ± 4.3; p = 0.003). However, the published data from this study could not be converted into a dichotomous outcome to be included in pooled analysis. HADS scores are presented in Supplementary Figure 1 (Supplemental Digital Content 1, http://links.lww.com/CCM/E178).

Figure 3

Figure 3

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Relatives:

One study (35) reported no significant improvement in anxiety (RR, 0.94; 95% CI, 0.66–1.33; p = 0.72) and depression scores (RR, 0.98; 95% CI, 0.5–1.9; p = 0.95) of 143 relatives with the use of ICU diaries (Supplementary Figs. 4 and 5, Supplemental Digital Content 1, http://links.lww.com/CCM/E178).

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HRQoL.

Patients:

Two studies (n = 541) used the Short Form (SF)–36 (42) to assess HRQoL. Bäckman et al (34) reported significant improvement in SF-36 up to 3 years post intervention. Svenningsen et al (36) reported on a subset of their study on ICU patients with delirium who received a diary. They reported significant improvement for the general health (GH) subsection of the SF-36. When pooled with the Bäckman et al (34) results, this demonstrated a mean increase of 11.46 (95% CI, 5.87–17.05; p ≤ 0.0001) in the GH section of the SF-36 scores at 6 months post ICU discharge. Other subsections were not reported in full by Svenningsen et al (36). The forest plot is presented in Supplementary Figure 2 (Supplemental Digital Content 1, http://links.lww.com/CCM/E178).

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Relatives:

No studies reported on HRQoL in relatives.

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Publication Bias

There were an insufficient number of studies to enable us to comment on publication bias from the funnel plots for all studied outcomes (Supplementary Fig. 7, Supplemental Digital Content 1, http://links.lww.com/CCM/E178). Egger test was not significant for the primary outcome.

A summary of the key findings are presented in Table 2, prepared using GradePro Guideline Development Tool (43).

TABLE 2

TABLE 2

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DISCUSSION

Despite a large number of publications pertaining to ICU diaries, few studies were included in this review and our results have to be interpreted with this limitation in mind. We found that ICU diaries were associated with an improvement in anxiety and depression in patients, and PTSD in families or relatives. We did not find a statistically significant effect for PTSD in patients.

For our primary outcome, PTSD, both Garrouste-Orgeas et al (35) and Jones et al (31) reported significant reduction in PTSD in their respective trials. In contrast, Glimelius Peterssen et al (37) reported increased PTSD in patients with a diary. This is potentially explained by several factors: their criterion for starting a diary was expected ICU stay of 3 or more days, but not all patients meeting this criterion received a diary, and the reasons for this are not explained fully. The ICU diaries group had almost double the ICU length of stay (9.7 vs 4.9 d) and more received invasive mechanical ventilation (90% vs 41%) than the control group. Finally, they only followed up their cohort to 2 months, despite acknowledging the 2002 Brussels Roundtable (44) which suggested follow-up should be for at least 6 months post ICU discharge. For comparison, the most significant results of Garrouste-Orgeas et al’ s (35) trial were not seen until the 12-month follow-up.

Anxiety, depression, and HRQoL all showed significant improvement with the use of patient diaries. Ultimately, quality of life is the most patient-centered outcome available. Surprisingly few studies addressed this as an outcome measure, and those that did had some methodological limitations—Bäckman et al (34) had significant losses to follow-up, particularly in those that did not receive diaries, and in the Svenningsen et al (36) study the focus was on the effect of delirium on PTSD, with the use of diaries reported as an observation. Thus, although in the present review HRQoL was significantly improved by ICU diaries, this is an area which would benefit from further investigation and more robust study design to enhance this conclusion. These are highly patient-centered outcomes of significant interest to patients, families, carers, clinicians, and the broader community, and thus would be useful to investigate in the future.

Two individual studies (32 , 35) demonstrated significant reduction in PTSD for relatives; however, the same significant results were not seen with anxiety and depression. This differential effect of diaries is plausible as the clarification and demystifying function of diaries may mitigate the trauma of having watched a relative suffer through critical illness and hence reduce PTSD, but not necessarily anxiety or depression.

Our study has a number of limitations. It was limited by the quality of included studies, which overall were of moderate quality with substantial risk of bias. Many of the studies were observational and included small patient numbers. Further, although several studies reported significant findings, we were unable to pool some results due to different reporting methods. As a result, we were only able to include three or fewer studies for meta-analysis for each outcome. Therefore, the risk of bias and inaccurate conclusions is high. Further, the length of follow-up ranged from hospital discharge (38) to 36 months post discharge (34), and all results were pooled together which is a cause of heterogeneity. Not all outcomes of interest to patients and families were reported, particularly functional outcomes. Our search was limited to English publications, and unpublished data were not sought.

The only previous systematic review on this topic included only RCTs and hence did not include a large proportion of the ICU diaries literature. Our search was extensive and identified papers not mentioned in previous reviews. Our results are consistent with, and advance upon the findings from previous reviews (5 , 18) which suggested that ICU diaries may reduce psychological morbidity after ICU admission for both patients and their families.

There are a number of ongoing trials which will add to the evidence base for ICU diaries. The ICU-Diaries study (24) is a multicenter RCT currently underway in France, and a further RCT (45) in Denmark is exploring if a diary written by relatives has similar effects on psychologic outcomes. Future research should address the effect on quality of life and activities of daily living, as these are likely to be of most value to patients. Uniform or standardized reporting of results as recommended by a recently reported Delphi process (46) would allow for results to be more easily compared and collaborated. We plan to perform an updated meta-analysis once the results of these above-mentioned studies have been published.

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CONCLUSIONS

The use of diaries for ICU patients improves anxiety, depression, and HRQoL. There is no statistically significant reduction in PTSD. Large prospective studies with comprehensive assessment of patient-centered outcomes are required for a definitive answer.

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Keywords:

critical illness; diaries; intensive care; postintensive care syndrome; posttraumatic stress disorder; systematic review

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