Optimizing Critical Illness Recovery: Perspectives and Solutions From the Caregivers of ICU Survivors.
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ABSTRACT: Objectives
To understand the unmet needs of caregivers of ICU survivors, how they accessed support post ICU, and the key components of beneficial ICU recovery support systems as identified from a caregiver perspective.Design
International, qualitative study.Subjects
We conducted 20 semistructured interviews with a diverse group of caregivers in the United States, the United Kingdom, and Australia, 11 of whom had interacted with an ICU recovery program.Setting
Seven hospitals in the United States, United Kingdom, and Australia.Interventions
None.Measurements and main results
Content analysis was used to explore prevalent themes related to unmet needs, as well as perceived strategies to improve ICU outcomes. Post-ICU care was perceived to be generally inadequate. Desired caregiver support fell into two main categories: practical support and emotional support. Successful care delivery initiatives included structured programs, such as post discharge telephone calls, home health programs, post-ICU clinics, and peer support groups, and standing information resources, such as written educational materials and online resources.Conclusions
This qualitative, multicenter, international study of caregivers of critical illness survivors identified consistently unmet needs, means by which caregivers accessed support post ICU, and several care mechanisms identified by caregivers as supporting optimal ICU recovery.
SUBMITTER: Sevin CM
PROVIDER: S-EPMC8162533 | biostudies-literature |
REPOSITORIES: biostudies-literature
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| S-EPMC7972647 | biostudies-literature
Project description:Many clinicians have implemented follow-up and aftercare to support patients following ICU. Some of this care is supported and facilitated by peer volunteers. There is limited contemporary work that has explicitly explored volunteer roles within ICU recovery services or the experience of volunteers undertaking these roles. We sought to explore the experience of survivors of critical illness, as volunteers, involved in ICU recovery services and understand their motivation for undertaking these roles.DesignQualitative exploration using in-depth semistructured interviews. The study design used an inductive content analysis process. We also documented the roles that were adopted by volunteers in each site involved in the study.SettingPatients and caregivers were sampled from seven sites across three continents.Patients and subjectsPatients and caregivers who had adopted peer-volunteering roles were undertaken.InterventionsNone.Measurements and main resultsTwelve patient and caregiver peer volunteers were interviewed. Four key themes were identified. These themes related to the experience of volunteers within ICU recovery services and their motivation for undertaking these roles: 1) self-belief and acceptance, 2) developing peer support, 3) social roles and a sense of purpose, and 4) giving back. Overwhelmingly, participants were positive about the role of the volunteer in the critical care setting.ConclusionsPeer volunteers undertake a variety of roles in ICU recovery services and during recovery more generally. These roles appear to be of direct benefit to those in these roles. Future research is needed to develop these roles and fully understand the potential impact on the service, including the impact on other patients.
| S-EPMC8191690 | biostudies-literature
Project description:BackgroundAs many as 70% of intensive care unit (ICU) survivors suffer from long-term physical, cognitive, and psychological impairments known as post-intensive care syndrome (PICS). We describe how the first ICU survivor clinic in the United States, the Critical Care Recovery Center (CCRC), was designed to address PICS using the principles of Agile Implementation (AI).MethodsThe CCRC was designed using an eight-step process known as the AI Science Playbook. Patients who required mechanical ventilation or were delirious ≥48 hours during their ICU stay were enrolled in the CCRC. One hundred twenty subjects who completed baseline HABC-M CG assessments and had demographics collected were included in the analysis to identify baseline characteristics that correlated with higher HABC-M CG scores. A subset of patients and caregivers also participated in focus group interviews to describe their perceptions of PICS.ResultsQuantitative analyses showed that the cognitive impairment was a major concern of caregivers. Focus group data also confirmed that caregivers of ICU survivors (n = 8) were more likely to perceive cognitive and mental health symptoms than ICU survivors (n = 10). Caregivers also described a need for ongoing psychoeducation about PICS, particularly cognitive and mental health symptoms, and for ongoing support from other caregivers with similar experiences.ConclusionsOur study demonstrated how the AI Science Playbook was used to build the first ICU survivor clinic in the United States. Caregivers of ICU survivors continue to struggle with PICS, particularly cognitive impairment, months to years after discharge. Future studies will need to examine whether the CCRC model of care can be adapted to other complex patient populations seen by health-care professionals.
| S-EPMC7048643 | biostudies-literature
Project description:BackgroundPatients who survive critical illness suffer from a significant physical disability. The impact of rehabilitation strategies on health-related quality of life is inconsistent, with population heterogeneity cited as one potential confounder. This secondary analysis aimed to (1) examine trajectories of functional recovery in critically ill patients to delineate sub-phenotypes and (2) to assess differences between these cohorts in both clinical characteristics and clinimetric properties of physical function assessment tools.MethodsTwo hundred ninety-one adult sepsis survivors were followed-up for 24 months by telephone interviews. Physical function was assessed using the Physical Component Score (PCS) of the Short Form-36 Questionnaire (SF-36) and Activities of Daily Living and the Extra Short Musculoskeletal Function Assessment (XSFMA-F/B). Longitudinal trajectories were clustered by factor analysis. Logistical regression analyses were applied to patient characteristics potentially determining cluster allocation. Responsiveness, floor and ceiling effects and concurrent validity were assessed within clusters.ResultsOne hundred fifty-nine patients completed 24 months of follow-up, presenting overall low PCS scores. Two distinct sub-cohorts were identified, exhibiting complete recovery or persistent impairment. A third sub-cohort could not be classified into either trajectory. Age, education level and number of co-morbidities were independent determinants of poor recovery (AUROC 0.743 ((95%CI 0.659-0.826), p < 0.001). Those with complete recovery trajectories demonstrated high levels of ceiling effects in physical function (PF) (15%), role physical (RP) (45%) and body pain (BP) (57%) domains of the SF-36. Those with persistent impairment demonstrated high levels of floor effects in the same domains: PF (21%), RP (71%) and BP (12%). The PF domain demonstrated high responsiveness between ICU discharge and at 6 months and was predictive of a persistent impairment trajectory (AUROC 0.859 (95%CI 0.804-0.914), p < 0.001).ConclusionsWithin sepsis survivors, two distinct recovery trajectories of physical recovery were demonstrated. Older patients with more co-morbidities and lower educational achievements were more likely to have a persistent physical impairment trajectory. In regard to trajectory prediction, the PF score of the SF-36 was more responsive than the PCS and could be considered for primary outcomes. Future trials should consider adaptive trial designs that can deal with non-responders or sub-cohort specific outcome measures more effectively.
| S-EPMC7517819 | biostudies-literature
Project description:BackgroundCritical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients' informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.MethodWe performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.ResultsThe search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15% and 24%, depression between 4.7% and 36.4% and post-traumatic stress disorder (PTSD) between 35% and 57.1%. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.ConclusionsInformal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.
| S-EPMC4721206 | biostudies-literature
Project description:PurposeTo describe the design and initial implementation of an Intensive Care Unit Recovery Center (ICU-RC) in the United States.Materials and methodsA prospective, observational feasibility study was undertaken at an academic hospital between July 2012 and December 2015. Clinical criteria were used to develop the ICU-RC, identify patients at high risk for post intensive care syndrome (PICS), and offer them post-ICU care.Results218/307 referred patients (71%) survived to hospital discharge; 62 (28% of survivors) were seen in clinic. Median time from discharge to ICU-RC visit was 29days. At initial evaluation, 64% of patients had clinically meaningful cognitive impairment. Anxiety and depression were present in 37% and 27% of patients, respectively. One in three patients was unable to ambulate independently; median 6min walk distance was 56% predicted. Of 47 previously working patients, 7 (15%) had returned to work. Case management and referral services were provided 142 times. The median number of interventions per patient was 4.ConclusionsAn ICU-RC identified a high prevalence of cognitive impairment, anxiety, depression, physical debility, lifestyle changes, and medication-related problems warranting intervention. Whether an ICU-RC can improve ICU recovery in the US should be investigated in a systematic way.
| S-EPMC6020044 | biostudies-literature
Project description:Many survivors of critical illness have problematic alcohol use, associated with risk of death and hospital readmission. We tested the feasibility, acceptability, treatment fidelity, and potential efficacy of a customized alcohol intervention for patients in ICUs. The intervention was delivered by a Recovery Navigator using principles of motivational interviewing and shared decision-making.DesignPilot randomized trial.SettingTwo urban ICUs in Denver, CO.PatientsPatients with problematic alcohol use were enrolled prior to hospital discharge.InterventionsPatients were randomly assigned to usual care, single-session motivational interviewing and shared decision-making, or multisession motivational interviewing and shared decision-making.Measurements and main resultsWe assessed feasibility via enrollment and attrition, acceptability via patient satisfaction (Client Satisfaction Questionnaire-8), fidelity via observation and questionnaires, and potential efficacy via group means and CIs on measures of alcohol use, psychiatric symptoms, cognition, and other alcohol-related problems. Over 18 months, we offered the study to 111 patients, enrolled 47, and randomized 36; refusals were mainly due to stigma or patients' desire to handle problems on their own. Groups were similar at baseline, and 67% of patients met criteria for alcohol use disorder. Average patient satisfaction was high (mean = 28/32) regardless of group assignment. Sessions were delivered with 98% adherence to motivational interviewing principles and excellent motivational interviewing spirit; patients perceived the intervention to be more autonomy supportive than usual care. Group means after 6 months suggested that patients receiving the intervention might improve on measures such as alcohol use, psychiatric symptoms, legal problems, and days of paid work; however, they did not receive more substance use treatment. All results were nonsignificant due to small sample size.ConclusionsA Recovery Navigator intervention was feasible and acceptable for delivering high-fidelity brief interventions to ICU patients. Changes in alcohol-related problems with motivational interviewing and shared decision-making were nonsignificant but clinically meaningful in size. A full-scale randomized trial of motivational interviewing and shared decision-making is warranted.
| S-EPMC7063892 | biostudies-literature
Project description:Anemia is common during critical illness, is associated with adverse clinical outcomes, and often persists after hospitalization. The goal of this investigation is to assess the relationships between post-hospitalization hemoglobin recovery and clinical outcomes after survival of critical illness. This is a population-based observational study of adults (≥18 years) surviving hospitalization for critical illness between January 1, 2010 and December 31, 2016 in Olmsted County, Minnesota, United States with hemoglobin concentrations and clinical outcomes assessed through one-year post-hospitalization. Multi-state proportional hazards models were utilized to assess the relationships between 1-month post-hospitalization hemoglobin recovery and hospital readmission or death through one-year after discharge. Among 6460 patients that survived hospitalization for critical illness during the study period, 2736 (42%) were alive, not hospitalized, and had available hemoglobin concentrations assessed at 1-month post-index hospitalization. Median (interquartile range) age was 69 (56, 80) years with 54% of male gender. Overall, 86% of patients had anemia at the time of hospital discharge, with median discharge hemoglobin concentrations of 10.2 (9.1, 11.6) g/dL. In adjusted analyses, each 1 g/dL increase in 1-month hemoglobin recovery was associated with decreased instantaneous hazard for hospital readmission (HR 0.87 [95% CI 0.84-0.90]; p < 0.001) and lower mortality (HR 0.82 [95% CI 0.75-0.89]; p < 0.001) through one-year post-hospitalization. The results were consistent in multiple pre-defined sensitivity analyses. Impaired early post-hospitalization hemoglobin recovery is associated with inferior clinical outcomes in the first year of survival after critical illness. Additional investigations are warranted to evaluate these relationships.
| S-EPMC9339589 | biostudies-literature
Project description:ICU acquired weakness (ICUAW) is a complication of critical illness characterized by structural and functional impairment of skeletal muscle that may persist for years after ICU discharge with many survivors developing protracted courses with few regaining functional independence. Elucidating molecular mechanisms underscoring sustained ICUAW is crucial to understanding outcomes linked to different morbidity trajectories as well as for the development of novel therapies. Quadriceps muscle biopsies and functional measures of muscle strength and mass were obtained at 7 days and 6 months post-ICU discharge from a cohort of ICUAW patients. Unsupervised co-expression network analysis of transcriptomic profiles identified discrete modules of co-expressed genes associated with the degree of muscle weakness and atrophy in early and sustained ICUAW. Modules were enriched for genes involved in skeletal muscle regeneration and extracellular matrix deposition. Collagen deposition in persistent ICUAW was confirmed by histochemical stain. Modules were further validated in an independent cohort of critically ill patients with sepsis-induced multi-organ failure and a porcine model of ICUAW, demonstrating disease-associated conservation across species and peripheral muscle type. Our findings provide a pathomolecular basis for sustained ICUAW, implicating aberrant expression of distinct skeletal muscle structural and regenerative genes in early and persistent ICUAW. Total RNA was extracted from approximately 200mg of quadriceps muscle (vastus lateralis) tissue in patients with Intensive care unit (ICU) acquired weakness (ICUAW) at day 7 post-ICU discharge (D7) and month 6 post-ICU discharge (M6), and from healthy controls (C)
2016-07-18 | E-GEOD-78929 | biostudies-arrayexpress
Project description:Post-intensive care unit (ICU) sequelae, including physical and mental health problems, are relatively unexplored. Characteristics commonly used to predict outcome lack prognostic value when it comes to long-term physical recovery. Therefore, the objective of this study was to assess the incidence of non-recovery in long-stay ICU-patients. In this single-centre study, retrospective data of adults with an ICU stay >48 hours who visited the specialized post-ICU clinic, and completed the Dutch RAND 36-item Short Form questionnaire at 3 and 12 months post-ICU, were retrieved from electronic patient records. In cases where physical functioning scores at 12 months were below reference values, patients were allocated to the physical non-recovery (NR) group. Significantly different baseline and (post-)ICU-characteristics were assessed for correlations with physical recovery at 12 months post-ICU. Of 250 patients, 110 (44%) fulfilled the criteria for the NR-group. Neither the severity of illness, type of admission, nor presence of sepsis did not differ between groups. However, NR-patients had a higher age, were more often female, and had a higher incidence of co-morbidities. Shorter LOS ICU, lower incidence of medical comorbidities, and better physical performance at 3 months were significantly correlated with 1-year physical recovery. Comorbidities and reduced physical functioning at 3 months were identified as independent risk-factors for long-term physical non-recovery. In conclusion, a substantial proportion of long-stay ICU-patients who visited the standard care post-ICU clinic did not fulfil the criteria for full physical recovery at 12 months post-ICU. Commonly used ICU-characteristics, such as severity of illness, do not have sufficient prognostic value when it comes to long-term recovery of health-related quality of life.
| S-EPMC7735575 | biostudies-literature