Education and support needs during recovery in acute respiratory distress syndrome survivors

Introduction  

There is a limited understanding of the long-term needs of survivors of the acute respiratory distress syndrome (ARDS) as they recover from their episode of critical illness. The Timing it Right (TIR) framework, which emphasizes ARDS survivors' journey from the ICU through to community re-integration, may provide a valuable construct to explore the support needs of ARDS survivors during their recovery.     

Pulmonary function and health-related quality of life in a sample of long-term survivors of the acute respiratory distress syndrome

Objective: We performed a follow-up cohort analysis in order to delineate the correlation between pulmonary function (PF) and health-related quality of life (HRQL) in patients after ARDS.¶Design: Follow-up cohort study.¶Setting: A 20-bed ICU of a university teaching hospital.¶Patients: A cohort of 50 long-term survivors of ARDS.¶Measurements and results: Measurements of PF (FVC, FEV₁, TLC, D_LCO) and HRQL (SF-36 Health Status Questionnaire) were made 5.5 years (median value) after discharge from the ICU. Impairments in PF (defined as PF results below 80 % of the predicted value) were frequent but generally mild. Twenty patients had a single PF impairment (with limitations in FEV1/FVC ratio in 12 patients being the most common), four patients had two (with D_LCO and FEV1/FVC ratio impairment the most common) and three patients had pathologic results in three PF tests (FEV₁/FVC ratio, TLC and capillary pO₂ during exercise in one case, FVC, TLC and capillary pO₂ during exercise in the second patient and FVC, TLC and D_LCO in the third). Compared to normal controls, survivors of ARDS showed impairments in all SF-36 health dimensions (p < 0.001). Patients with multiple (> 1) PF impairments described the lowest HRQL with major limitations in all SF-36 categories (p < 0.037) including physical and mental summary scores (36.5 vs 46.9, p = 0.037 and 31.3 vs 51.4, p = 0.003) when compared to patients with no or only one PF impairment.¶Conclusions: Long-term survivors of ARDS have a significant reduction in HRQL and the presence of multiple PF impairments is associated with maximal decrements in HRQL.     

糖皮质激素在重症医学科急性呼吸窘迫综合征中的应用

目的评价糖皮质激素(glucocorticoids,GCs)在重症监护室(intensive care unit,ICU)治疗急性呼吸窘迫综合征(acute respiratory distress syndrome,ARDS)中的作用。方法回顾性分析本院入住ICU的ARDS患者的临床资料,并根据致病因素在肺损伤中的作用,将所入选患者分为肺内源性ARDS(primarily from pulmonary diseases,ARDSp)和肺外源性ARDS(primarily from extra-pulmonary diseases,ARDSexp);ARDSp患者62例,ARDSexp患者101例。根据GCs的使用量各分为3组,分析ARDSp及ARDSexp应用GCs和未应用GCs患者的病情改善和病死率。结果 ARDSp及ARDSexp患者各组急性生理与慢性健康评分(Acute Physiology and Chronic Health EvaluationⅡ,APACHE-Ⅱ)相当(P0.05)。GCs治疗30mg/d组与≥30mg/d组比较,病情改善时间和呼吸机治疗时间明显缩短(P0.01),病死率也略低(P0.05);GCs治疗30mg/d组与非GCs治疗组比较差异有统计学意义(P0.01);≥30mg/d组与非GCs治疗组比较差异无统计学意义(P0.05)。ARDS患者总体病死率23.3%(38/163),其中使用GCs治疗组病死率22.8%(34/149),未使用GCs治疗组病死率28.6%(4/14)(P0.05)。结论低剂量(30mg/d)、早期应用(24h内)、长期疗程(7d)的GCs,可及时遏制炎性介质的"瀑布样效应",在一定程度上缩短病程,降低病死率。     

Long-term health-related quality of life in survivors of severe acute pancreatitis

OBJECTIVE: To evaluate the health-related quality of life (HRQL) and postdischarge outcome after severe acute pancreatitis. DESIGN AND SETTING: Observational study in a department of surgery (surgical and general intensive care unit) in a tertiary care hospital. PATIENTS AND PARTICIPANTS: Of 283 patients with severe acute pancreatitis 211 survived; during a follow-up period an additional 27 died. The Rand 36-item Health Survey with accessory question was mailed to 174 eligible patients. The final study population comprised 145 patients (83% response rate). Age- and sex-matched Finnish population scores were compared with the study population; accessory questions were analyzed separately. RESULTS: No clinically significant differences were found in long-term HRQL between study patients and the general population. Of the 145 patients 87% returned to work, 27% suffered recurrent pancreatitis, and 43% developed diabetes. Of 113 patients with alcohol-induced severe acute pancreatitis 30% were abstinent and 28% problem drinkers, alcohol-dependent, or alcoholics. CONCLUSIONS: Up to 13% of severe acute pancreatitis patients surviving initial hospitalization die within a few years. Among the survivors long-term HRQL is comparable to that of the normal population. The majority return to work and reduce their alcohol consumption markedly.     

Mechanism of injury influences quality of life in survivors of acute respiratory distress syndrome

Objective Growing evidence suggests that acute respiratory distress syndrome (ARDS) occurring as a consequence of primary (direct) lung injury differs from that resulting from secondary (indirect) lung injury in terms of radiographic appearance, response to interventions, and outcomes. We examined whether there are differences in quality of life (QOL) in survivors of ARDS attributable to the mechanism of underlying lung injury.Design and setting Prospective observational cohort study in 54 intensive care units in Canada and the United States.Patients and participants Survivors of ARDS (n = 73) were grouped according to underlying cause of ARDS (i.e., primary vs. secondary lung injury) and followed prospectively for 12 months.Measurements and results QOL was assessed using the Medical Outcomes Study 36-item Short Form Health Survey (SF-36) and the St. George's Respiratory Questionnaire (SGRQ), and spirometry was performed at each outpatient follow-up visit. At 3 months mortality and QOL outcomes were similar between the groups, but by 12 months patients with primary lung injury had significantly better QOL scores in four of eight SF-36 domains and in two of three domains of the SGRQ. Differences were not attributable to duration of ICU or hospital length of stay, duration of mechanical ventilation, comorbidities prior to the index illness, or differences in spirometry during the follow-up period.Conclusions QOL in survivors of ARDS appears to be influenced by the mechanism of lung injury (primary vs. secondary), lending support to the concept that ARDS is a heterogeneous condition.This article is discussed in the editorial available at:     

Survivors of acute respiratory distress syndrome: relationship between pulmonary dysfunction and long-term health-related quality of life

BACKGROUND: Patients who survive acute respiratory distress syndrome (ARDS) often report decreased general health-related quality of life (HRQOL) following hospital discharge. The extent to which this impairment is due to pulmonary or nonpulmonary causes is unclear. We describe the pattern of recovery of patients surviving ARDS to illuminate any relationships between lung spirometry values, pulmonary symptoms, and overall HRQOL. METHODS: Seventy-three survivors of ARDS were enrolled in a 12-month follow-up study as part of a phase III randomized, multicenter trial. Patients were contacted at 3, 6, and 12 months after enrollment to complete generic and disease-specific HRQOL questionnaires and have lung spirometry tests performed. RESULTS: For all domains of the Medical Outcomes Study Short Form-36 (SF-36) and the St. George's Respiratory Questionnaire (SGRQ) at all time intervals, survivors of ARDS had significantly lower scores than age- and sex-matched population values. Over the 12-month follow-up period, we observed significant improvements to the overall Physical Component Score, but the Mental Component Score of the SF-36 and the SGRQ scores were not statistically different. Physical performance measures suggested that by 12 months, 57% had not returned to "normal activity." At 12 months, lung spirometry tests demonstrated mild abnormalities that were stable over time (64% and 49% had <80% predicted forced expiratory volume in 1 sec [Fev1] and forced vital capacity [Fvc], respectively). At 12 months, the forced expiratory volume in 1 sec correlated strongly with the physical function domain of the SF-36 (correlation coefficient = 0.601; p < .01) and moderately with all domains of the SGRQ (correlation coefficient = -0.36, -50; p < .01 in all cases). In addition, there were several strong to moderate correlations between the various domains of the SF-36 and SGRQ. CONCLUSIONS: Survivors of ARDS have considerable respiratory symptoms and reduced HRQOL that is still prevalent at 12 mos following onset of injury. There are significant correlations between lung spirometry, pulmonary symptoms, and overall HRQOL, thus suggesting the acute lung injury/ARDS is causally contributing to the observed long-term outcome.     

Alveolar mobilization maneuver during intensive care of neonatal respiratory distress syndrome

The research is devoted to the assessment of the impact of the method of anesthesia on the psychoneurological status of a newborn during surgical delivery. It is revealed that subarachnoid anesthesia does not adversely affect the central nervous system of a newborn and is one of the best options for anesthetic management during surgical delivery because it provides a sufficient level of analgesia and is of a greatest safety for mother and child.     

The effect of postintensive care syndrome on the quality of life of intensive care unit survivors: A secondary analysis

BackgroundDespite increasing interest in postintensive care syndrome and the quality of life of intensive care unit survivors, the empirical literature on the relationship between these two variables is limited.ObjectivesThis study aimed to examine whether postintensive care syndrome predicts the quality of life of intensive care unit survivors.MethodsWe analysed secondary data, which were collected as part of a larger cross-sectional study. The participants were recruited from six health institutions in Korea. The data of 496 survivors who had been admitted to an intensive care unit for at least 48 h during the past year were analysed. They responded to measures of postintensive care syndrome and quality of life.ResultsThe participants' mean physical and mental component summary scores (quality of life) were 40.08 ± 8.99 and 40.24 ± 11.19, respectively. Physical impairment (β = ?0.48, p < 0.001), unemployment (β = ?0.19, p < 0.001), low income (β = ?0.11, p = 0.004), older age (β = ?0.08, p = 0.039), and cognitive impairment (β = ?0.11, p = 0.045) predicted lower physical component summary scores. Mental (β = ?0.49, p < 0.001) and cognitive impairment (β = ?0.14, p = 0.005) and low income (β = ?0.09, p = 0.014) predicted mental component summary scores.ConclusionsThe participants reported poor physical and mental health–related quality of life. Postintensive care syndrome, unemployment, low income, and older age were the main predictors of poor quality of life. In addition, postintensive care syndrome was a stronger risk factor for poor quality of life than demographic characteristics and intensive care unit treatment factors.     

Transesophageal echocardiography in prone position during severe acute respiratory distress syndrome

Objective  

Patients with severe acute respiratory distress syndrome (ARDS) often require prolonged sessions of prone position (PP) because of refractory hypoxemia. Because of frequent hemodynamic impairment, use of transesophageal echocardiography (TEE) is also advocated during ARDS, but its implementation during PP has not been described yet. Our objective is to report the feasibility, tolerance, and therapeutic implications of TEE during PP for severe ARDS, and to compare it with TEE performed supine.     

Quality of life in acute respiratory distress syndrome survivors may be no worst than in other ICU survivors

OBJECTIVE: To compare the health-related quality of life (HR-QOL) in acute respiratory distress syndrome (ARDS) survivors with that in a matched control group of non-ARDS survivors. DESIGN AND SETTING: Prospective, matched, parallel cohort study, comparing HR-QOL between intensive care unit (ICU) survivors with ARDS and a control group in a tertiary care hospital. PATIENTS: Between May 1997 and December 2000, all ARDS adult patients of an eight-bed medical/surgical unit of a tertiary care hospital were enrolled and a control group of non-ARDS survivors, matched for severity of disease and for previous health state, was selected. The study included 29 ARDS survivors who answered the EQ-5D questionnaire and had lung function evaluated. MEASUREMENTS AND RESULTS: A follow-up appointment was performed 6 months after ICU discharge consisting of: (a) evaluation of HR-QOL using EQ-5D and (b) lung function tests and measure of diffusing capacity. Among ARDS survivors 41% had normal lung function and 59% mild to moderate lung function impairments. Nearly a one-third of ARDS survivors reported problems in one or more of the five dimensions of the EQ-5D, and 48% reported feeling worse at the interview than 6 month before ICU admission. No significant differences were found in HR-QOL between ARDS survivors and other ICU survivors with similar age and matched for previous health state and severity of disease. CONCLUSIONS: This study suggests that impairments in HR-QOL among ARDS survivors may not be distinguishable from that among other ICU survivors.     

Nursing care of patients with severe acute respiratory syndrome in the intensive care unit: case reports in Hong Kong

Severe acute respiratory syndrome (SARS) was diagnosed in more than 8437 patients in 25 countries between February and July 2003. During this period the World Health Organisation issued a global alert about SARS and together with the Centre for Disease Control have coordinated their efforts to investigate its pathogenesis and treatment. The outbreak in Hong Kong has been dramatic due to its geographical proximity with Guangdong province, China where the first case of SARS was reported. SARS has been described as a rapidly progressive, sometimes fatal pneumonia with a case fatality rate of 7.6% requiring intensive care. The four case reports illustrate a number of important points concerning the recognition, treatment, management and prevention of SARS, and highlights the importance of considering vigilant assessment and monitoring of patients with SARS. The purpose of this paper is to share our experiences in caring for critically ill patients with SARS in the intensive care unit to nurses globally in order to reduce SARS' morbidity and mortality as well as to protect nurses and other healthcare workers from this disease that is so far threatening the community at large.     

The epidemiology of acute respiratory distress syndrome in pediatric intensive care units in China

Objective  To assess the incidence of, predisposing factors for, and the rates and relative risks of mortality from acute respiratory distress syndrome (ARDS) in pediatric patients. Design  A prospective study in 12 consecutive months from 2004 to 2005 in 25 pediatric intensive care units (PICUs). Patients and setting  ARDS was diagnosed according to the 1994 American–European Consensus Conference definitions, applied to all severely ill admissions between 1 month and 14 years of age. The PICUs were in major municipalities and provincial cities, and half were university affiliated. Measurements and results  From a total of 12,018 admissions, 7,269 were severely ill. One hundred and five (1.44%) patients developed ARDS and 64 (61.0%) died, which accounts for 13.2%, of the total ICU death (n = 485, 6.7%) or a nine times relative risk of dying. The median age at onset of ARDS was 24 months and 40% were less than 12 month old. Median time from PICU admission to the onset of ARDS was 16 h, and in 63% <24 h. Pneumonia (55.2%) and sepsis (22.9%) were the major predisposing factors for ARDS. These were respectively 14 and 5 times as high a death rate as those of the severely ill patients without ARDS. Conclusions  ARDS has a high mortality in these Chinese PICUs, especially in those with pneumonia and sepsis, and adequate management including lung protective ventilation strategy is required. Electronic supplementary material  The online version of this article (doi:) contains supplementary material, which is available to authorized users.     

Canadian nurses' and respiratory therapists' perspectives on withdrawal of life support in the intensive care unit

PURPOSE: To describe perspectives of nurses (RNs) and respiratory therapists (RTs) related to end-of-life care for critically ill patients. METHODS: For patients who had life support withdrawn in 4 Canadian university-affiliated ICUs, RNs and RTs reported their comfort level with decision making and process for 14 aspects of end-of-life care. RESULTS: Ninety-eight patients had life support withdrawn. Responses were received from 96 (98.0%) bedside RNs and 73 (74.5%) RTs. Most RNs (85/94, 90.4%) and RTs (50/73, 68.5%) were very comfortable with decisions to withhold cardiopulmonary resuscitation or to withdraw life support (83/94, 88.3% of RNs and 56/73, 76.7% of RTs). Most RNs (range 71.3%-80.65%) and RTs (60.0%-70.8%) were very comfortable with ventilation/oxygen withdrawal and sedation. Among paired responses for 72 (73.5%) of 98 patients, RTs rated less favorably than RNs ( P < .05): the quality of the physician explanation of the life support withdrawal process, the availability of the physician, the peacefulness of the dying process, and the amount of privacy for families. Suggested improvements included earlier and more inclusive discussions, clearer plans, and better preparation of families and the ICU team for patients' deaths. CONCLUSIONS: Most RNs and RTs were comfortable with decision making and the process of life support withdrawal, but they suggested several ways to improve end-of-life care.     

Well-being in informal caregivers of survivors of acute respiratory distress syndrome

OBJECTIVE: With limited community services, the complex rehabilitation period after critical illness is often the responsibility of family members who, as a result, may experience negative health outcomes. The objectives of this research were to a) identify aspects of the caregiving situation that are associated with caregivers' experiences of emotional distress and psychological well-being; and b) compare health-related quality of life of informal caregivers to survivors of acute respiratory distress syndrome (ARDS) with age- and gender-matched population values. DESIGN: Cross-sectional survey of informal caregivers to ARDS survivors. SETTING: Toronto, Ontario, Canada. PATIENTS: Informal caregivers were individuals who were primarily responsible for providing and/or coordinating ARDS survivors' posthospital care and were not paid to do so. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The dependent variables were emotional distress, psychological well-being, and health-related quality of life. They were evaluated by the Center for Epidemiologic Studies Depression Scale, the Positive Affect Scale, and Medical Outcomes Study Short Form 36, respectively. Independent variables included severity of illness indicators, patient depression (Beck Depression Inventory II), aspects of the caregiving experience (care provided, lifestyle interference, personal gain), and psychosocial resources (mastery and social support). Caregivers experienced more emotional distress when they experienced more lifestyle interference, had lower levels of mastery, and were caring for ARDS survivors with more depressive symptoms (F3,42 = 15.69, p < .001, adjusted R = .50). In contrast, caregiver psychological well-being was associated with personal gains as a result of providing care and having more mastery and social support (F4,41 = 9.40, p < .001, adjusted R = .43). Caregivers reported poorer health-related quality of life across all domains of the Medical Outcomes Study Short Form 36 compared with age- and gender-matched population values. CONCLUSIONS: Informal caregivers experience negative health outcomes that persist almost 2 yrs after ARDS. New approaches, such as family-centered rehabilitation, caregiver education, improved respite, and home care, may benefit informal caregivers.     

Research issues in the evaluation of cognitive impairment in intensive care unit survivors

Neuropsychological assessment has been utilized extensively in the research of cognitive outcomes associated with medical illnesses, such as HIV, and post-surgical procedures, such as coronary artery bypass graft. However, few investigations of intensive care unit (ICU) survivors have examined cognitive function as a clinical outcome. Significant clinical questions exist regarding the impact of critical illness on long-term cognitive function. Many of these questions can be systematically evaluated through the use of standardized neuropsychological assessment instruments within the context of well designed, prospective research trials. This review will provide information for clinical researchers interested in the study of neuropsychological outcomes in intensive care unit survivors ( a comparison article in this issue will address clinical issues related to cognitive functioning).Electronic Supplementary Material Supplementary material is available in the online version of this article at     

Chronic sleep disorders in survivors of the acute respiratory distress syndrome

Purpose  Sleep disruption is well recognized in the Intensive Care Unit. Poor sleep quality likely continues following discharge from hospital in several patients and becomes a chronic disorder in some. The aim of this study was to describe the etiology of chronic sleep complaints in survivors of ARDS. Methods  Seven ARDS survivors with no previous sleep complaints who reported difficulty sleeping 6 months or more following discharge from hospital were evaluated. Sleep quality was assessed subjectively with a sleep history and the Insomnia Severity Index and objectively with polysomnography. Daytime sleepiness was assessed with the Epworth Sleepiness Scale. Results  A chronic sleep disorder was identified in each patient who reported difficulty sleeping. The primary sleep disorder was chronic conditioned insomnia (5 patients), parasomnia (1 patient) and obstructive sleep apnea (1 patient). In addition, 4 patients had periodic leg movements, which was of uncertain clinical significance. Conclusion  Chronic sleep disorders, which originate during the acute illness, are present in some ARDS survivors several months after discharge from hospital. If unrecognized, lack of treatment may contribute to impaired quality of life and incomplete rehabilitation from their critical illness. Electronic supplementary material  The online version of this article (doi:) contains supplementary material, which is available to authorized users.     

传染性非典型肺炎患者社会支持与心理健康的关系

目的:探讨传染性非典型肺炎(seveveacuterespiratorysyndrome,SARS)患者的社会支持状况对心理健康的影响。方法:使用领悟社会支持量表(PSSS)和症状自评量表(SCL-90),对22例SARS患者进行社会支持与心理健康状况的评估,并运用相关和回归分析,对两者之间的关系进行探讨。结果:①SARS患者总的社会支持总均分为(4.21±0.52),家庭内源性支持总均分为(4.30±0.71),家庭外源性支持总均分为(4.17±0.53),这说明SARS患者在疾病状态下获得了较多的社会支持,其中男患者所感受到的社会支持程度比女患者高,未婚患者所感受到的社会支持程度比已婚患者高,但此差异并无统计学显著意义。②多元逐步回归及相关分析表明,社会支持对SARS患者心理健康状况具有显著的影响(R2=0.374)。社会支持总分与SCL-90总均分呈显著的负相关(r=-0.584),其中家庭外源性支持与抑郁症状相关明显(r=-0.616),家庭内源性支持与人际敏感症状相关明显(r=-0.479)。结论:SARS患者具有较好的社会支持,良好的社会支持可帮助SARS患者有效应对疾病应激,维护其心理健康水平。