• Laura Comini, Silvana Rocchi, Gisella Bruletti, Mara Paneroni, Giorgio Bertolotti, and Michele Vitacca.
• Direzione Sanitaria Fondazione Salvatore Maugeri, IRCCS Lumezzane (Brescia), Italy. laura.comini@fsm.it.
• Respir Care. 2016 Apr 1; 61 (4): 405-15.

BackgroundThe objective of this work was to evaluate the time course of clinical and health-related quality of life outcomes of long-stay ICU survivors' and caregivers' burden.MethodsThe 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 (sit-to-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.ResultsAt T0, subjects showed compromised EQ-5Dindex (0.42 ± 0.28); 69% of caregivers had high Family Strain Questionnaire and moderate Caregiver Needs Assessment scores (30 ± 13). EQ-5Dindex 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-5Dindex (P < .05), whereas caregivers' burden scores were unchanged. However, the percentage of caregivers with strain increased.ConclusionsIn prolonged-ICU-stay survivors, EQ-5Dindex at hospital discharge is related to clinical status and caregivers' strain. Subjects' clinical status and EQ-5Dindex improves over time, but caregivers' burden remains high, suggesting the need to monitor/support caregivers.Copyright © 2016 by Daedalus Enterprises.

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