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Aims To describe burden and health-related quality of life amongst caregivers of out-of-hospital cardiac arrest survivors and explore the potential association with cognitive function of the survivors. Caregivers of patients with ST-elevation myocardial infarction were used as controls. Methods Data were collected from the cognitive substudy of the Targeted Temperature Management-trial. Caregiver burden was assessed with the 22-item Zarit Burden Interview, with scores ≤20 considered as no burden. Health-related quality of life was assessed with the SF-36v2®, with T-scores 47-53 representing the norm. Cardiac arrest survivors were categorized based on the results from cognitive assessments as having “no cognitive impairment” or “cognitive impairment”. Results Follow-up 6 months post event was performed for caregivers of 272 cardiac arrest survivors and 108 matched myocardial infarction controls, included at an intended ratio of 2:1. In general, caregivers of cardiac arrest survivors and controls reported similar caregiver burden. The overall scores for quality of life were within normative levels and similar for caregivers of cardiac arrest survivors and control patients. Compared to those with no cognitive impairment, caregivers of cognitively impaired cardiac arrest survivors (n=126) reported higher levels of burden (median 18 versus 8, p<0.001) and worse quality of life in five of eight domains, particularly “Role-Emotional” (mean 45.7 versus 49.5, p=0.002). Conclusions In general, caregivers of cardiac arrest survivors and myocardial infarction controls reported similar levels of burden and quality of life. Cognitive outcome and functional dependency of the cardiac arrest survivor impact burden and quality of life of the caregiver.
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Background Patients resuscitated from cardiac arrest who have severe neurological or functional disability at discharge require high-intensity long-term support. However, few data describe the long-term survival and health-care utilization for these patients. Methods We identified a cohort of cardiac arrest survivors ≥18 years of age, treated at a single center in Western Pennsylvania from January 2010 to December 2019, with a modified Rankin scale (mRS) of 5 at hospital discharge. We recorded demographics, cardiac arrest characteristics, and neurological exam at hospital discharge. We characterized long term survival and mortality through December 31, 2020 through National Death Index query. We described survival time overall and in subgroups using Kaplan-Meier curves. We linked cases with administrative data to determine 30, 90 day, and one-year hospital readmission rate. For subjects unable to follow commands at discharge, we reviewed records from index hospitalization to the present to describe improvement in neurological status and return home. Results We screened 2,687 patients of which 975 survived to discharge. We identified 190 subjects with mRS of 5 at hospital discharge who were sent to non-hospice settings. Of these, 43 (23%) did not follow commands at discharge. One-year mortality was 38% (n=71) with a median survival time of 4.2 years (IQR 0.3-10.9). Duration of survival did not differ based on age, sex, or ability to follow commands at hospital discharge. Within the first year of discharge, 58% (n=111) of subjects had at least one hospitalization with a median length of stay of 8 days [IQR 3-19]. Of subjects who did not follow commands at hospital discharge, 5/43 (11%) followed commands and 9 (21%) were reportedly living at home on subsequent encounters. Conclusions Of survivors treated over a decade at our institution, 20% (n= 190) were discharged from the hospital with severe functional disability. One-year mortality was 38%, and hospital readmissions were frequent. Few patients discharged unable to follow commands regained the ability over the period of observation, but many did return to living at home. These data can help inform decision maker expectations for patient trajectory and life expectancy.
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Background: Caring for patients with dementia at home is often a long-term process, in which the independence of the patient declines, and more responsibility and supervision time is required from the informal caregiver. Objective: In order to minimize and reduce caregiver burden, it is important to explore its trajectory and the accompanying risk factors as dementia progresses; the objective of this systematic review. Methods: PRISMA guidelines were followed in this systematic review. Three databases, PubMed, PsycINFO, and EMbase, were systematically searched in November 2019 using specific keywords. Results: 1,506 hits emerged during the systematic search but only eleven articles actually met the inclusion criteria for this review. The trajectory of caregiver burden is highly variable and depends on multiple factors. Important risk factors included: patients' behavioral and neuropsychiatric symptoms, and their decline in functioning in (I)ADL; the caregiver's age, gender, and physical and mental health; and, within the dyads (patient/caregiver), cohabitation and kinship. Conclusion: There is no one-size-fits-all for predicting how caregiver burden will change over time, but specific factors (like being a spouse and increased behavioral impairment and decline in functional status in the patient) may heighten the risk. Other factors, not yet comprehensively included in the published studies, might also prove to be important risk factors. Future research in the field of reducing caregiver burden is recommended to integrate the patient, caregiver, and context characteristics in the trajectory of caregiver burden, and to assess more clearly the phase of the dementia progression and use of external resources.
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Background Long-term outcomes of awakened survivors of out-of-hospital cardiac arrest (OHCA) is poorly known. Research Question What are the month (M)-18 outcomes of survivors of out-of-hospital cardiac arrest (OHCA) who awakened during the first 2 weeks post-OHCA and their poor-outcome risk factors? Study Design and Methods: All OHCA survivors with Glasgow coma score ≥12 during the first 2 weeks post-OHCA were enrolled in six ICUs and followed at M3, M6, M12 and M18. The primary outcome measure was Glasgow outcome scale-extended (GOS-E) at M18. Secondary outcome measures included evaluation of neurological, behavioral and cognitive disabilities, health-related quality of life (HR-QOL), anxiety and depression, and poor-outcome risk factors (GOS-E≤6) at M18. Results Among 139 included patients, 98 were assessable for the primary outcome measure. At M18, 64 (65%) had full recovery or minor disabilities (GOS-E>6), 18 (18%) had moderate disabilities but were autonomous for daily-life activities (GOS-E=6), 12 (12%) had poor autonomy (GOS-E<6 but >1) and 4 had died. Percentages of GOS-E>6 patients increased significantly over the 18-month study period. At M18, no patients had major neurological disabilities, 20% had cognitive disabilities, 32% had anxiety symptoms, 25% had depression symptoms, and their HR-QOL was impaired as compared to sex- and age-matched population. Low-flow time, Sequential Organ-Failure Assessment Score at admission, coma duration >3 days after CA or mechanical ventilation on days 3 and 7 were associated with poor functional outcome. Interpretation Among patients who awoke (GCS≥12) in the 14 days following OHCA, 35% had moderate-to-severe disabilities or had died at M18. Interestingly, patients improved until M18 post-OHCA. Risk factors associated with poor functional outcome were low-flow time, clinical severity at ICU admission, prolonged coma duration and mechanical ventilation.
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Cardiac arrest systems of care are successfully coordinating community, emergency medical services, and hospital efforts to improve the process of care for patients who have had a cardiac arrest. As a result, the number of people surviving sudden cardiac arrest is increasing. However, physical, cognitive, and emotional effects of surviving cardiac arrest may linger for months or years. Systematic recommendations stop short of addressing partnerships needed to care for patients and caregivers after medical stabilization. This document expands the cardiac arrest resuscitation system of care to include patients, caregivers, and rehabilitative healthcare partnerships, which are central to cardiac arrest survivorship.
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Aim of the study: Advances in resuscitation science have resulted in a growing number of out-of-hospital cardiac arrest (OHCA) survivors. However, we know very little about the natural history of recovery and the unmet needs of survivors and their partners. This qualitative study sought to address this knowledge gap to improve understanding of the consequences of surviving cardiac arrest. Methods: In-depth qualitative interviews were undertaken separately with survivors and their partners between 3 and 12-months following the cardiac arrest. An interpretative phenomenological approach (IPA) to data analysis was adopted. Developing themes were discussed between members of the research team. Results: 8 survivors (41-79 years; 5 male; mean time 6.3 months post-hospital discharge) and 3 partners (1 male) were interviewed. The key (super-ordinate) theme of being 'trapped in a disrupted normality' was identified within the data. Five related subordinate themes included: existential impact, physical ramifications, emotional consequences, limiting participation in social activities and altered family roles. Conclusion: Recovery for survivors is hindered by a wide range of physical, emotional, cognitive, social and spiritual challenges that disrupt perceptions of 'normality'. Survivors and their carers may benefit from focussing on establishing a 'new normal' rather than striving to achieve a pre-cardiac social and physical position. Survivor-centred assessment should support rather than undermine this goal.
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Aim: To describe the detailed health-related quality of life (HRQoL) in survivors from the TTM-trial and to investigate potential differences related to sex and age. Methods: This is a cross-sectional study originating from a large prospective international, multicentre trial, including 442 respondents who answered the Short Form-36 item Questionnaire Health Survey version 2® (SF-36v2®) at a structured follow-up 6 months after out-of-hospital cardiac arrest (OHCA). Statistical analysis between independent groups were performed with Mann-Whitney U or Chi-square. Age was analysed primarily as a dichotomised variable. Results: Although overall physical and mental health were within the normal range, a substantial proportion of respondents had impaired function at domain-specific levels, particularly in Role-Physical (50%) and Role-Emotional (35%). Females scored significantly lower than males in; Physical Functioning (41.7 vs. 47.9, p < 0.001), Role-Physical (40.4 vs. 44.3, p = 0.02), General Health (47.0 vs. 50.5, p = 0.02), Vitality (47.2 vs. 52.7, p < 0.001), and Role-Emotional (41.5 vs. 46.2, p = 0.009). Those ≤65 years scored significantly better in Physical Functioning (47.9 vs. 44.1 p < 0.001), while those >65 years scored significantly better in Vitality (50.8 vs. 53.7, p = 0.006) and Mental Health (50.3 vs. 52.6, p = 0.04). Conclusions: Many OHCA survivors demonstrated impaired function in HRQoL at a domain level, despite most patients reporting an acceptable general HRQoL. Females reported worse HRQoL than males. Older age was associated with a worse Physical Functioning but better Vitality and Mental Health. Role-Physical and Role-Emotional aspects of health were especially affected, even when effects of age and sex where accounted for.
Article
Background Out‐of‐hospital cardiac arrest survivors suffer from psychological distress and cognitive impairments. They experience existential insecurity and vulnerability and are striving to return to a life in which well‐being and the meaning of life have partly changed. However, research highlighting the experiences of in‐hospital cardiac arrest survivors is lacking. This means that evidence for postresuscitation care has largely been extrapolated from studies on out‐of‐hospital cardiac arrest survivors, without considering potential group differences. Studies investigating survivors’ experiences of an in‐hospital cardiac arrest are therefore needed. Aim To illuminate meanings of people's lived experiences of surviving an in‐hospital cardiac arrest. Design An explorative, phenomenological hermeneutic method to illuminate meanings of lived experiences. Method Participants were identified through the Swedish national register of cardiopulmonary resuscitation and recruited from two hospitals. A purposive sample of eight participants, 53–99 years old, who survived an in‐hospital cardiac arrest 1–3 years earlier, was interviewed. Findings The survivors were striving to live in everyday life and striving for security. The struggle to reach a new identity meant an existence between restlessness and a peace of mind, searching for emotional well‐being and bodily abilities. The search for existential wholeness meant a quest for understanding and explanation of the fragmented cardiac arrest event and its existential consequences. The transition from hospital to home meant a transition from care and protection to uncertainty and vulnerability with feelings of abandonment, which called for a search for security and belonging, away from isolation and loneliness. Conclusion Surviving an in‐hospital cardiac arrest can be further understood by means of the concept of hospital‐to‐home transition. Following hospital discharge, patients felt vulnerable and abandoned when pending between denial and acceptance of the ‘new’ life. Hence, the healthcare system should play a significant role when it comes to facilitate cardiac arrest survivors’ security during hospital‐to‐home transition.
Article
Background: This study aimed to assess long-term cognitive and functional outcomes in out-of-hospital cardiac arrest (OHCA) patients treated with targeted-temperature management, investigate the existence of prognostic factors that could be assessed during initial admission and evaluate the usefulness of classic neurological scales in this clinical scenario. Methods: Patients admitted due to OHCA from August 2007 to November 2015 and surviving at least one year were included. Each patient completed a structured interview focused on the collection of clinical, social and demographic data. All available information in clinical records was reviewed and a battery of neurocognitive and psychometric tests was performed. Results: Seventy-nine patients were finally included in the analysis. Forty-three patients (54.4%) scored below the usual cut-off points for the diagnosis of mild cognitive impairment, even though most of these deficits went unnoticed when patients were assessed using CPC and modified Rankin scale. Nineteen (24%) developed certain degree of impairment in their attention capacity and executive functions. A significant proportion developed new memory-related disorders (43%), depressive symptoms (17.7%), aggressive/uninhibited behavior (12.7%) and emotional lability (8.9%). A greater number of weekly hours of intellectual activity and a qualified job were independent protective factors for the development of cognitive impairment. However, being older at the time of the cardiac arrest was identified as a poor prognostic factor. Conclusions: There is a high prevalence of long-term cognitive deficits and functional limitations in OHCA survivors. Most commonly used clinical scales in clinical practice are crude and lack sensitivity to detect most of these deficits.
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Research highlights the psychosocial impact of critical illness on family who typically adopt a caregiver role to the survivor. We review evidence on informal caregiver psychosocial outcomes and interventional studies designed to improve them. We argue informal caregivers have distinct and complex needs that differ from patients. Interventional studies ought to be designed for this cohort with careful attention paid to the timing of interventions. We consider the influence of social isolation on recovery and discuss service improvement approaches to build social support networks to enhance recovery, where caregivers and survivors are involved in the design of aftercare programs.