Abstract

Importance

The long-term quality of life (QoL) of post-Intensive Care patients is lower compared to the general population. The influence of a Post-Intensive Care Outpatient Clinic (PICOC) is unknown. We examined the effect of the PICOC on the long-term QoL.

Objectives

Examination of the intervention of a PICOC on the long-term QoL.

Design

A retrospective cohort study.

Setting and Participants

A retrospective cohort study was conducted at a level 3 mixed Intensive Care Unit (ICU). The patients included in this study were admitted at the ICU for >7 days between 2014-2016 and completed the questionnaires (SF-36, IES, HADs) after 3 months of discharge. Patients who did not respond to the questionnaires after 3 months or died before completing the questionnaires at 12 months of discharge were excluded.

Main Outcomes and Measures

To measure the difference in quality of life, both mentally and physically, the questionnaires SF-36, HADs and IES were used at three months and after one year of discharge from the ICU.

Results

Overall, 113 patients were included of which 54 visited the PICOC  The mean scores of the 4 domains of QoL, namely physical functioning (p=0.017), mental health (p=0.045), vitality (p=0.009) and general health experience (p=0.018),  were significantly improved between 3 and 12 months after discharge of the ICU in patients who visited the PICOC compared to patients who did not.. Also, anxiety scores significantly decreased to a larger extent over time in patients who visited the PICOC (p=0.0001) in comparison to those who did not.

Conclusions and Relevance

Patients that were admitted on the ICU for >7 days and visited the PICOC after 3 months of discharge of the ICU showed a significantly greater improvement in QoL and mental health compared to patients who did not visit the PICOC.

BACKGROUND

Since 2011, patients admitted to the ICU in the St. Antonius Hospital Nieuwegein have been offered the opportunity to visit the Post-Intensive Care Outpatient Clinic (PICOC) after discharge from the ICU. Every patient that was admitted to the ICU for more than 7 days received an invitation to visit the PICOC and received questionnaires about quality of life and mental health. Visit to the PICOC is on voluntary basis.  First, the patient had a consult with an ICU nurse. The conversation with the nurse focused on the mental well-being, the memories and the feelings of the patient. Second, depending on the patient’s wishes or needs, the nurse gave a tour on the ICU and showed an empty IC-room. At last, the patient met one of the Intensivists who explained what the patient had been through during admission on the ICU. Furthermore, this physician checked if the patient experienced mental and physical limitations after discharge. Depending on the limitations, the patients received advice about medication and if necessary a referral to a psychologist or another specialist.

To minimize the likelihood of developing Post-Intensive Care Syndrome (PICS) and improve the quality of life after ICU discharge, it is important to identify the group of patients who have a higher risk of a lower quality of life, as well as the appearance of anxiety disorder, depression and Post-Traumatic Stress Disorder (PTSD). Although recent research has been published about the long-term quality of life after discharge of the ICU, it is currently unclear what the effect is of the PICOC on the quality of life.[1, 2, 3] The goal of this study is to describe the difference in long-term follow up of post-intensive care patients who visited the PICOC after three months of discharge compared to patients who did not visit the clinic in terms of SF-36, HADs and IES questionnaires.[4]

METHODS

Study design and population

A retrospective cohort study was conducted at the St. Antonius Hospital (Nieuwegein, the Netherlands) in the period of October 2014 through October 2016. The St. Antonius Hospital is a level 3 mixed ICU, caring for approximately 3300 admissions annually. The department has a total of 30 intensive care beds and 10 medium care beds.
The Medical Ethical Assessment Committee (METC) gave approval to conduct the study. Informed consent was obtained from all eligible patients by letter.[5] The inclusion criteria were: admitted at the ICU for more than 7 days and completion of the questionnaires (SF-36, IES, HADs) after 3 months of discharge of the ICU. Also, 4 patients were included in this study who were admitted at the ICU for a period of less than seven days. They made an appointment on their own initiative at the PICOC. The exclusion criteria were: deceased patients or patients who did not completed the questionnaires (SF-36, HADs, IES) after 3 months of discharge from the ICU.

Measures and data collection

To measure the quality of life the questionnaires SF-36, HADs and IES were used. The SF-36 (Short Form 26 Health Survey) [6] consist of 36 questions which form 8 domains. These domains are physical functioning, social role functioning, physical role functioning, emotional role functioning, mental health, bodily pain, vitality and general health perceptions. Points are given for each answer in the questionnaire. The sum of the awarded points for each question is converted into a score of 0-100.
The Hospital Anxiety and Depression scale (HADs) consist of 14 questions, the 7 (even numbered) questions are about non-physical symptoms, so these questions  can be used to diagnose depression in patients with physical limitations, and the  7 (odd numbered) questions can be used to diagnose anxiety. The cut-off point is more than 7 points for anxiety or depression. This questionnaire has a specificity of 0.9 for anxiety and 0.83 for depression, the specificity is 0.78 for anxiety and 0.79 for depression.[7, 8]

The Impact of Event Scale (IES) investigates the effect of a traumatic event (admission to the ICU). The questions are about two dimensions of PTSD, namely the reliving and avoidance of the event. There are 4 possible answers (0=never, 1=rarely, 3=sometimes, 5=often) and occurrence of PTSD might be indicated by the sum for all the questions reaching above 26 points. The questionnaire has a sensitivity of 0.80 and a specificity of 0.72.[9]

The following data were collected from the Electronic Patients Dossier (Metavision [iMDsoft, 2012] , Intrazis [ICT St. Antonius Hospital, 2003]: age, length of stay, previous medical history, reason for admission to the ICU, delirium (defined as yes or no), days on mechanical ventilation,  number of days on vasoactive medications (norepinephrine, dopamine, epinephrine, milrinone),  kidney function (laboratory test: creatinine), need for Continues Veno-Venous Hemofiltration (defined as yes or no), highest SOFA score during ICU treatment, scores of the SF-36, HADs, IES questionnaires after 3 months, PICOC visit (yes or no), and the policy of the PICOC.

Data analysis

Descriptive statistics were implemented for the baseline characteristics. The descriptive data are presented as mean (SD), range, and percentage. The QoL was assessed using the SF-36 questionnaire. We compared the converted scores of each domain of the SF-36 after 3 and 12 months of discharge of the ICU. We calculated the delta score (score at 3 months minus the score at 12 months) of each domain. As reference, we used the mean results of the general Dutch population between the age of 65 and 75 years old of a large cohort study conducted at the university of Groningen (RAND 36, study Groningen). The mental health of patients was assessed using the HADs questionnaire for anxiety (odd questions >7 points) and depression (even questions > 7 points) and the IES questionnaire for PTSD (a score >26). Differences between the two groups for categorical data were calculated  using the Pearson chi-square test. The student t-test was used for continuous data and the paired samples t-test was used to compare the difference in SF-36 score between 3 and 12 months. The predictors of quality of life were: age; severity of illness (highest SOFA score during admission at the ICU); ICU length of stay. These were analyzed by linear regression (using the SF-36 as the independent variable) and by logistic regression (using the HADS, IES, and PICOC clinic visit as the independent variables).  Risk profile models were obtained by multivariate analysis and a backward stepwise regression was used to identify the most influent predictors of quality of life. The data is depicted as odds ratio (OR) (logistic regression) and as beta coefficient (linear regression) with 95% confidence intervals. Statistical significance was assumed when P <.05. The tables and figures of the QoL were generated in Excel and the statistical analyses were conducted in SPSS.

RESULTS

Five hundred and twenty-two patients were admitted to the ICU at the St. Antonius hospital in the period of October 2014 until October 2016 [figure 1]. Two hundred and nine patients completed the questionnaires (SF-36, HADs, IES) after three months of discharge of the ICU of which 90 patients visited the PICOC 120 of the 522 patients (23%) died in the first year after discharge of the ICU. Of the 209 patients who completed the form after three months, another 10% (21/209) died after one year of discharge. In total 75 patients refused to participate in filling in the questionnaires for the second time The reasons why patients did not participate in the study varied ranging from no need, no time to a too difficult confrontation of reminding the period of ICU admission, as was gathered from contact by telephone.The response rate of this research was 60.1% (113/188).  The baseline characteristics of the patients included in this study are presented in Table 1.

Quality of life

The scores of the SF-36 questionnaire are summarized in table 2. The mean values of the 8 domains of quality of life (physical functioning, social role functioning, physical role functioning, emotional role functioning, mental health, bodily pain, vitality and general health perceptions) were lower after 3 months of discharge than in the general Dutch population (age 65-75) [figure 2A].  After >12 months of discharge from the ICU, the health change of the whole study population is higher in comparison with the general Dutch population (age 65-75) [figure 2A].
The patients who visited the PICOC after 3 months have significantly lower mean values of physical role functioning (11.7 vs 21.8, p=0.009), mental health (71.2 vs 78.7, p=0.020), bodily pain (63.1 vs 76.0, p=0.012) and general health experience (48.5 vs 57.8, p=0.015) in comparison to patients who did not visit the PICOC. After >12 months there is no significant difference between those two groups [table 2.].

Mental health

The scores of the HADs (anxiety, depression) and IES (PTSD) questionnaires are summarized in table 2. After 3 months, 16 patients who visited the PICOC have a total IES score of >26 versus 9 in the group who did not visit the PICOC (p=0.070). Furthermore, there are significantly more patients who visited the PICOC with a score >7 for depression (14 versus 3, p=0.008) and anxiety (17 versus 5, p=0.10) [table2]. There is no significant difference between the two groups after >12 months.

Delta between 3 and 12 months

In general, the whole study population showed an improvement between 3 and 12 months of physical functioning (48.8 vs 55.4, p=0.10), emotional functioning (59.7 vs 72.6, p=0.0001), physical role functioning (21.6 vs 43.5, p=0.0001), vitality (56.3 vs 59.4, p=0.006), change in health (36.2 vs 66.4, p=0.0001) and a decrease in total score for depression (4.6 vs 4.2, p=0.040).
To measure the effect of the PICOC, the differences between the mean values of 3 and 12 months were calculated. The physical functioning (2.7 vs 0.5, p=0.017), mental health (1.3 vs -0.2, p=0.045), vitality (1.5 vs -0.2, p=0.009) and the general health experience (1.2 vs -0.9, p=0.018) improved significantly more over time in patients who visited the PICOC. Also, the total score on the HADs for anxiety decreased significantly for patients having visited the PICOC compared to the other group  (-1.8 vs 0.9, p=0.0001). Furthermore,  PICOC visited patients  tended to have a lower score for depression (-1.2 vs 0.0, p=0.081), although this difference was not statistically significant [Table 2, figure 2B].

DISCUSSION

This retrospective study confirmed that all patients admitted to the ICU have a persistent lower quality of life compared to the general Dutch population of the same age.[10] Previous studies stated that patients admitted to the ICU had a lower quality of life before admission than the general population.[11] The long-term follow-up of patients showed that patients improve in physical functioning, emotional functioning, physical role functioning, vitality, change in health and depression between 3 and 12 months after discharge from the ICU. Those results are consistent with the study of Badia et al, where elective surgical patients where observed to evaluate the changes in quality of life from baseline to 12 months.[12] The effect of post-intensive care interventions, such as the influence of the PICOC on the quality of life, have not been studied yet.[13, 14]
We found a significant difference in the population of patients who visited the PICOC compared to those that did not. At baseline, the patients who have not visited the PICOC, are younger, smokes more and have less vascular diseases. Furthermore, these patients experienced more physical role limitations, bodily pain, mental health problems and a lower experience of general health. After 3 months, there is a significant difference in quality of life (SF-36) and the mental health (HADs, IES) between the patients who did visit and who didn’t visit the PICOC. After 12 months, there is no difference between those two groups. More importantly, this study shows that patients who visit the PICOC have a significantly improvement of change of health. In contrast to previous finding, we found a significant decrease in anxiety by patients who visited the post IC-clinic. Also, they tended to have a lower score for depression. In a systematic review in 2005, Dowdy et al concluded that without intervention of a PICOC, the physical functioning of patients discharged from the ICU improved rapidly and was associated with the patient’s age and severity of illness.[11] However, the patient’s mental health showed no improvement and was independent of baseline characteristics.

We cannot fully attribute the improvement of quality of life and mental health to the PICOC. Firstly, there is a significant difference of baseline characteristics between patients who visited the PICOC compared to patients who did not visit the clinic. The patients who visited the PICOC were younger and had in general a lower quality of life. Since there is no equal control group, the change in quality of life is unclear for the scenario where these patients had not visited the PICOC. Secondly if patients have experienced severe illness, it is possible that they have a lower internal standard and appreciate their lives in a different way.[15]

Thirdly, the exact patient management (e.g. drug therapy, physical therapy, psychologist support) after discharge of the ICU is unclear.

Fourthly, the psychologist in the St. Antonius hospital noted that patients who were referred from the post-IC with a suspicion of PTSD (IES score > 26) were less likely to have the diagnosis PTSD based on the DSM IV criteria.  A possible cause of this over-diagnosis of PTSD can be explained by the structure of the IES questionnaire. This list consists of questions about two dimensions of the PTSD: the reliving of the event and the avoidance of unpleasant feelings/memories of the event. Because of the lack of questions about increased excitability (criterion D of the DSM IV), the IES cannot be used as a diagnostic tool for PTSD. However, the IES is a reliable questionnaire to measure general stress and dysfunction. Therefore, it can be used to get a reliable impression of the impact of the ICU admission on the patient’s mental well-being.[16]

This study has several strength of which the first is his novelty in investigating the effect of the PICOC on the long-term quality of life of patients after discharge of the ICU. Important to note is that this retrospective study has a high response rate of 60.1% (113/188 patients). Furthermore, we used extensive and validated questionnaires to measure the quality of life of the patients.

The choice to only invite the patients who were admitted for more than 7 days to the ICU limited the number of patients, but we excluded the uncomplicated post-operative patients who were admitted for close monitoring and observation. The percentage of medical admissions is greater in the study population than is registered in the NICE records.[17]  However, we have noted that patients with a shorter duration of admission also have the need for a follow-up appointment. Because of this limitation, we cannot extrapolate the positive effect of PICOC to the patients who are admitted for less than 7 days. We only selected the patients who responded at the invitation and filled in the questionnaire after 3 months of discharge which can lead to a selection bias.

The limitation of a retrospective design is that there is a lot of missing data. There are incomplete questionnaires which are filled in after 3 months and it is not possible to retrieve this information after 12 months. Furthermore, the electronic patient dossier is not fully maintained, resulting in a lack of information about the policy of the PICOC.

CONCLUSION

In summary, this study confirmed that patients who visited the post-IC outpatient clinic had a significant greater improvement in quality of life and mental health compared to patients who did not visit the post-intensive care outpatient clinic. Further research is necessary to measure the effect of the PICOC on the quality of life of patients who were admitted for less than 7 days. With the PICOC, we miss the elderly patients with a low quality of life or/and mental disorders. Therefore, we suggest to contact these patients by telephone, house-visit or to inform the general practitioner.

ACKNOWLEDGEMENTS

Compliance with ethical standards

Conflicts of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Ethics Approval

Ethical approval for this study was obtained from the research and development from the Sint Antonius Ziekenhuis (Z.17.060).

 

ABBREVIATIONS

CVVH, Continuous Veno-Venous Hemofiltration; DSM IV, Diagnostic and Statistical Manual of Mental Disorders IV; EF, Emotional Functioning; ERL, Emotional Role Limitation; GHE, General Health Experience; HADs, Hospital Anxiety and Depression Scale; HC, Health Change;  IC, Intensive Care; ICU, Intensive Care Unit; IES, Impact of Event Scale; METC, Medical Ethical Assessment Committee; MH, Mental health; NICE, National Intensive Care Evaluation; OR, Odds Ratio; PF, Physical Functioning; PICOC, Post-Intensive Care Outpatient Clinic; PICS, Post-Intensive Care Syndrome; PMF, Patient Mobilization Frame; PRL, Physical Role Limitation; PTSD, Post-Traumatic Stress Disorder; RAND-36, Research ANd Development (36) Health Survey; SD, Standard Deviation; SF-36, Short Form (36) Health Survey; SOFA, Sequential Organ Failure Assessment; QoL, Quality of Life.