Impact of Clinical and Quality of Life Outcomes of Long-Stay ICU Survivors Recovering From Rehabilitation on Caregivers' Burden

Abstract

BACKGROUND: The objective of this work was to evaluate the time course of clinical and healthrelated quality of life outcomes of long-stay ICU survivors' and caregivers' burden. METHODS: The study included 23 subjects of mixed diagnosis (66 ؎ 11 y, body mass index 26.5 ؎ 5.6 kg/m 2 ) with a recent episode of acute respiratory failure needing in-hospital rehabilitation. Subjects and caregivers were evaluated at hospital discharge (T0, n ‫؍‬ 23) and 6 months later (T6, n ‫؍‬ 16). At T0 and T6, subjects' clinical status (Dependence Nursing Scale), FVC (percent-of-predicted FVC and percent-of-predicted FEV), maximum inspiratory/expiratory pressures, effort tolerance (sitto-stand, Takahashi test, 6-min walking distance), and disability (Barthel index) were evaluated. EuroQol-5D (EQ-5D), McGill Quality of Life, General Perceived Self-Efficacy Scale, and Hospital Anxiety and Depression Scale (HADS-A/HADS-D) were assessed. Caregivers' burden was measured by the Family Strain Questionnaire short form and Caregiver Needs Assessment. Correlation between subjects' clinical status and caregiver assessments was performed at T0. RESULTS: At T0, subjects showed compromised EQ-5D index (0.42 ؎ 0.28); 69% of caregivers had high Family Strain Questionnaire and moderate Caregiver Needs Assessment scores (30 ؎ 13). EQ-5D index was significantly related to Dependence Nursing Scale score (P < .001), percent-of-predicted FVC (P < .02), effort tolerance (all P < .01), disability (P < .001), and caregiver Family Strain Questionnaire score (P < .02). At T6, subjects significantly improved percent-of-predicted FVC (P < .05), maximum expiratory pressure (P < .01), effort tolerance (all P < .05), disability (P < .02), and EQ-5D index (P < .05), whereas caregivers' burden scores were unchanged. However, the percentage of caregivers with strain increased. CONCLUSIONS: In prolonged-ICU-stay survivors, EQ-5D index at hospital discharge is related to clinical status and caregivers' strain. Subjects' clinical status and EQ-5D index improves over time, but caregivers' burden remains high, suggesting the need to monitor/support caregivers.

Caring for the critically ill patients over 80: a narrative review

“…Post-traumatic stress disorder (PTSD) and strain are seen in 21% of the caregivers [ 120 ]. A randomized trial, where caregivers provided respiratory physiotherapy at home, showed improvement of the cardiorespiratory status of the patients and their HRQoL (as measured with the EuroQoL 5D methodology) [ 121 , 122 ]. While the majority of the above-mentioned studies were not specifically designed for the very elderly patient group, it seems logical that the perceived strain, depressive symptoms and HRQoL will also translate to this group of caregivers.…”

Challenges for ICU Survivors and Their Caregivers

“…In this issue of RESPIRATORY CARE, Comini et al 20 present interesting findings from their study of physical and psychological outcomes in ICU survivors and strain and information needs in family caregivers at 2 time points: (1) hospital discharge after an in-patient rehabilitation program (n ϭ 23) and (2) 6 months post-hospital discharge (n ϭ 16). The authors also explored relationships between outcomes in ICU survivors and caregivers' strain, defined as the severity of stress experienced by family caregivers.…”

“…Notably, the study findings suggest that the pace of psychological recovery may not be synchronous with the pace of physical recovery. Comini et al 20 found that, despite notable improvement in physical function, there was no change in perceived quality of life or self-efficacy in the first 6 months post-hospital discharge. Consistent with reports from previous studies, [21][22][23] these findings suggest that the impact of critical illness persists for an extended period of time and even after recovering physical independence, distress from remaining physical symptoms (eg, fatigue) may still be present.…”

“…Given the small sample size, Comini et al 20 were not able to examine factors that might be associated with greater strain and information needs. We can, however, speculate that strain in family caregivers of ICU survivors was influenced by varied factors in addition to physical function.…”

“…This supported prior findings 19,21 that those who experienced more severe decrements in physical function rated their quality of life less positively, and their caregivers experienced greater strain. In a subgroup of dyads (n ϭ 16) that included subjects alive at 6 months post-hospital discharge, Comini et al 20 reported that ICU survivors reported significant improvement in measures of physical function (eg, sit-to-stand test, 6-min walk distance, Takahashi test, and Barthel index). However, despite improvement in physical function, there were no significant changes in ICU survivors' psy-chological outcomes (eg, overall quality of life and general perceived self-efficacy) or caregiver strain and information needs.…”