Hospital Pedro Hispano has an open model, mixed surgical-medical intensive care unit with 8 beds and approximately 300 admissions per year. The ICU outreach team has different components with a Medical Emergency Team and a Follow-up Team. The Follow-up Team is responsible for the assessment of patients during all hospital stay after ICU, in particularly at three moments: first week, 1 month after ICU or at the hospital discharge and 3 months after discharge from ICU in a Follow-up Clinic. A nurse and a physician make up the Follow-up Team.

All surviving patients who stayed at ICU for at least two days were included along with their family. Patient characteristics, severity of illness (measured with SAPS II at first 24h)9 and length of ICU stay were collected. Risk for PICS was assessed at admission based on described risk factors and patients with at least one risk factor were considered as at risk. All patients, both considered as at risk or not, were assessed for PICS at different moments namely at ICU discharge, at their first week in ward, at 1 month after or hospital discharge and at 3 months after discharge. Three months after ICU stay patients were invited to attend the Follow-up Clinic for revaluation and PICS assessment. In all moments patients were evaluated for both physical and non-physical PICS.

Physical components (mobility impairment, ICU-acquired weakness) were clinically evaluated and the “Medical Research Council Scale for Muscle Strength” was used.10 A score ≤4 was considered for a decreased muscle strength and if present in at least two muscular groups was coded as ICU acquired weakness. As for the psychological components (anxiety, depression, post-traumatic stress disorder), the questionnaires “Hospital Anxiety and Depression Scale” (HADS)11 and “Post-Traumatic Stress Syndrome 14 Questions Inventory” (PTSS-14)12 were applied. For Anxiety and Depression subscales, a HADS >10 was considered positive to the mood disorder and a HADS between 8 and 10 as being suggestive of the presence of the respective state (the authors used the number ten as cut-off decision). A PTSS ≥49 was considered positive to post-traumatic stress disorder risk. Before 3 months’ assessment, questionnaires were sent by mail in advance. In all moments patients received the questionnaires in advance and were able to answer then alone and quietly. For the purpose of this study only data on PICS-P at 3 months after ICU discharge was analyzed, independently how much time passed over the date of hospital discharge.

Caregiver was defined as the individual who provided the majority of support for the patient. No cohabitation or legal relation with the patient was required. Caregiver eligibility criteria included: being a non-paid caregiver, able to read and speak Portuguese and accept to participate in the study.

Caregivers were invited to the Patients’ Follow-up Clinic to assess burden 3 months after the patient discharge and were evaluated in the same day as the patient. Family burden was assessed using the “Zarit Burden Interview” which is a self-response questionnaire designed to expose the issues experienced by caregivers.13–16 Caregivers were asked to respond to a series of 22 questions about the impact of the patients’ disabilities on their life. For each item, caregivers indicate how often they felt that specific burden (never=0, rarely=1, sometimes=2, quite frequently=3, or nearly always=4). Higher scores indicate greater caregiver distress. As previously described by Zarit, caregivers were classified as without overburden if the Zarit result was less than or equal to 21, with low overburden if they reach a score between 22 and 40, or with high overburden if they have a score of at least 41.17 The questionnaire was sent in advance by mail to all caregivers which allowed them to answered it quietly and lonely at home and then bring it to the Follow-up Clinic. Caregiver's burden was assessed only at 3 months after patient's ICU discharge.

It was a purely observational study without any implication in patients or caregivers’ treatment. All questionnaires, both for patients and caregivers, were preceded by an introduction where it was explained the purpose of the questionnaire and that it would be used in a scientific observational study. Informed consent was waved. Patients and caregivers voluntarily answered the questionnaires and confidentiality was maintained. This study has been assessed and approved by the Institutional Ethics Committee.

The relationship between caregiver's burden and the presence of different components of patient's PICS, patient characteristics, severity of illness and length of ICU stay were also analyzed. Categorical variables were described through absolute (n) and relative (%) frequencies, and continuous variables were described as mean and standard deviation, median, percentiles, and minimum and maximum when appropriate. Hypotheses were tested regarding the distribution of continuous variables with non-normal distribution by using the non-parametric Mann–Whitney and Kruskal–Wallis tests, depending on the nature of the hypothesis. For categorical variables, a Chi-square test or a Fisher's exact test was used, as appropriate.

All the reported p-values were two-sided, and p-values of <0.05 were considered statistically significant. All data were arranged, processed and analyzed with SPSS® v.23.0 (Statistical Package for Social Sciences).

During the study period 636 patients were admitted to ICU. The most frequent admission motives were: septic shock, respiratory failure and post-major surgery. The mortality rate was 19% (n=120). From surviving patients, 161 were excluded from the study as they stayed less than 48h at the ICU. A total of 355 met the criteria to be followed by the Follow-up team and 245 were evaluated in the Follow-up Clinic 3 months after (Fig. 1). Fifty-seven patients died between ICU discharge and consultation and another 53 missed the clinic for different reasons. Patient characteristics at 3 months Follow-up Clinic are summarized in Table 1.

Figure 1.

Flow chart of patient and caregiver enrolment (in attachment).

(0.25MB).

Three months after their ICU stay, 106 patients (43%) reported at least one component of PICS: 20% had depression, 19% anxiety, 11% post-traumatic stress disorder, 11% mobility impairment and 20% ICU acquired weakness.

Over the study period, 168 caregivers completed the survey, with a response rate of 69% as 77 patients failed to have their caregiver evaluated (Fig. 1). Exactly 50% (n=84) of the caregivers reported no overburden, 34.5% (n=58) experienced low overburden and 15.5% (n=26) felt moderate to high overburden.

Impact of patient's PICS on caregiver's burden was finally analyzed on a sample of 168 patients and caregivers (paired). From this group, two patients sent their answered questionnaires to the clinic but failed to be present there, so they were not evaluated for physical limitations. For that reason, for comparison between caregivers and physical PICS only 166 pairs were considered.

Patient's anxiety and depression at 3 months (median HADS of 12 for anxiety and Median HADS of 9 for depression) has a statically significant association with higher degrees of caregiver's overburden (Zarit ≥ 41). Physical components of patients’ PICS at 3 months failed to show influence on caregivers’ burden. There were no differences in caregivers’ burden regarding patients gender, age, SAPS II and ICU length of stay (Table 2).