Potential risk factors for reduced quality of life and increased health care utilization in ARDS survivors: results from the multicenter cohort study DACAPO.

AIM: To analyze the association of individual pre-ICU risk factors (obesity, physical and mental comorbidity, smoking status) on the long-term recovery process in survivors of the acute respiratory distress syndrome (ARDS; outcomes: health related quality of life, health care utilization; measured at 12, 24, and 36 months after ICU discharge). FINDINGS: Results show a possible causal link between pre-ICU risk factors and subsequent recovery of survivors of ARDS, especially with regard to mental health related quality of life. PURPOSE: Identifying relevant pre-existing risk factors, such as mental health problems, will enable the identification of at-risk patients, thus aiding in the improvement of long-term healthcare for survivors of critical illness.

Quality of Life and Long-Term Mortality Among Survivors of Extracorporeal Membrane Oxygenation: A Nationwide Cohort Study in South Korea.

OBJECTIVES: The quality of life after extracorporeal membrane oxygenation therapy has emerged as an important issue for extracorporeal membrane oxygenation survival; however, its association with long-term prognosis has not been identified. We investigated the changes in the quality of life after extracorporeal membrane oxygenation among the survivors and examine the association between a worse quality of life and 3-year all-cause mortality. DESIGN: This was a population-based cohort study. SETTING: Data were obtained from the National Health Insurance Service database in South Korea. PATIENTS: Adult individuals (≥ 18 yr old) who received extracorporeal membrane oxygenation therapy from 2006 to 2017 were included. Extracorporeal membrane oxygenation survivors were defined as patients who had survived for 1-year after the initiation of extracorporeal membrane oxygenation therapy. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The income level, employment status, and registered disability were examined before and 1-year after extracorporeal membrane oxygenation therapy. The decreased income level, job loss, and newly acquired disability were considered as change in the quality of life among extracorporeal membrane oxygenation survivors. A total of 5,821 adult extracorporeal membrane oxygenation survivors were included in the final analysis, and 2,959 patients (50.8%) experienced quality of life change. Specifically, 1,782 patients (30.6%) experienced a decrease in income, 682 (11.7%) lost their jobs, and 1,540 (26.5%) had a new disability within 1-year after extracorporeal membrane oxygenation therapy. In the multivariable Cox regression model, newly acquired disability was associated with 2.31-fold higher 3-year all-cause mortality among extracorporeal membrane oxygenation survivors (hazard ratio, 2.31; 95% CI, 1.79-2.97; p < 0.001), while job loss (p = 0.180) and decreased income (p = 0.993) were not associated with the 3-year all-cause mortality. CONCLUSIONS: At 12 months after extracorporeal membrane oxygenation therapy, nearly half survivors experienced quality of life worsening such as unemployment, decreased income, and new disability. Additionally, among the three factors, acquiring a new disability might significantly increase the 3-year mortality. This is the first study to report the association between changes in the quality of life and long-term prognosis in extracorporeal membrane oxygenation survivors.

Quality of life following adult veno-venous extracorporeal membrane oxygenation for acute respiratory distress syndrome: a systematic review.

BACKGROUND: Veno-venous extracorporeal membrane oxygenation (VV-ECMO) has been used successfully for the past decade in adult patients with acute respiratory distress syndrome (ARDS) refractory to conventional ventilatory support. However, knowledge of the health-related quality of life (HRQoL) in VV-ECMO patients is still limited. Thus, this study aimed to provide a comprehensive overview of the HRQoL following VV-ECMO support in ARDS patients. METHODS: A systematic search was performed on PubMed and Web of Science databases from January 1st, 2009 to October 19th, 2020. Studies reporting on HRQoL following VV-ECMO for ARDS in adults were included. Two authors independently selected studies, extracted data, and assessed methodological quality. RESULTS: Eight studies were eligible for inclusion, consisting of seven observational studies and one randomized controlled trial (total N = 441). All eight studies had a quantitative design and reported 265 VV-ECMO survivors to have a reduced HRQoL compared to a generally healthy population. Follow-up time varied between six months to three years. Additionally, only four studies (total N = 335) compared the HRQoL of VV-ECMO (N = 159) to conventionally treated survivors (N = 176), with one study showing a significantly better HRQoL in VV-ECMO survivors, while three studies were stating comparable HRQoL across groups. Notably, most survivors in these studies appeared to experience varying degrees of anxiety, depression, and post-traumatic stress disorder (PTSD). CONCLUSIONS: ARDS survivors supported by VV-ECMO have a decline in HRQoL and suffered from physical and psychological impairments. This HRQoL reduction is comparable or even better to the HRQoL in conventionally treated ARDS survivors.

Factors associated with delirium among survivors of acute respiratory distress syndrome: a nationwide cohort study.

BACKGROUND: The prevalence of delirium, its associated factors, and its impact on long-term mortality among survivors of acute respiratory distress syndrome (ARDS) is unclear. METHODS: Since this was a population-based study, data were extracted from the National Health Insurance database in South Korea. All adults who were admitted to intensive care units with a diagnosis of ARDS between January 1, 2010, and December 31, 2019, and who survived for ≥ 60 days were included. The International Statistical Classification of Diseases and Related Health Problems, tenth revision code of delirium (F05) was used to extract delirium cases during hospitalization. RESULTS: A total of 6809 ARDS survivors were included in the analysis, and 319 patients (4.7%) were diagnosed with delirium during hospitalization. In the multivariable logistic regression analysis after covariate adjustment, male sex (odds ratio [OR] 1.60, 95% confidence interval [CI] 1.23, 2.08; P < 0.001), longer duration of hospitalization (OR 1.02, 95% CI 1.01, 1.03; P < 0.001), neuromuscular blockade use (OR 1.50, 95% CI 1.12, 2.01; P = 0.006), benzodiazepine (OR 1.55, 95% CI 1.13, 2.13; P = 0.007) and propofol (OR 1.48, 95% CI 1.01, 2.17; P = 0.046) continuous infusion, and concurrent depression (OR 1.31, 95% CI 1.01, 1.71; P = 0.044) were associated with a higher prevalence of delirium among ARDS survivors. In the multivariable Cox regression analysis after adjustment for covariates, the occurrence of delirium was not significantly associated with 1-year all-cause mortality, when compared to the other survivors who did not develop delirium (hazard ratio: 0.85, 95% CI 1.01, 1.71; P = 0.044). CONCLUSIONS: In South Korea, 4.7% of ARDS survivors were diagnosed with delirium during hospitalization in South Korea. Some factors were potential risk factors for the development of delirium, but the occurrence of delirium might not affect 1-year all-cause mortality among ARDS survivors.

User-Perceived Negative Respiratory Symptoms Associated with Electronic Cigarette Use.

INTRODUCTION: Electronic cigarettes (ECIGs) expose users to an aerosol containing chemicals, which could affect the respiratory system negatively. This study examined negative respiratory symptoms associated with ECIG use. METHODS: In 2019, adult current ECIG users from 24 US states who reported experiencing negative respiratory symptoms from ECIG use (n = 49; 44.9% women; mean age = 35.2, SD = 11.5) completed an online survey and brainstormed statements that completed the prompt: "A specific negative effect or symptom related to my breathing, nose, mouth, throat, or lungs that I have experienced from vaping/using my e-cigarette is..." Participants sorted the final list of 56 statements into groups of similar content and rated statements on how true they were for them. Multidimensional scaling analysis identified thematic clusters. RESULTS: Eight ECIG use respiratory symptom clusters identified in analysis included Mucus and Congestion, Fatigue, Throat Symptoms, Breathing Problems, Mouth Symptoms, Chest Symptoms, Illness Symptoms, and Nose and Sinus Symptoms. Highly rated (ie, most common) symptoms included dry throat or mouth, fatigue during physical activity, coughing, shortness of breath, excessive phlegm, and bad taste in mouth. Mean cluster ratings did not differ based on lifetime cigarette smoking status (100 lifetime cigarettes smoked), but current cigarette smokers (ie, dual users) rated the Fatigue, Breathing Problems, Mucus and Congestion, and Nose and Sinus Symptoms clusters higher than noncurrent cigarette smokers. CONCLUSIONS: Participant-identified respiratory symptoms perceived to be ECIG related, many similar to cigarette smoking symptoms. Future research should assess if these symptoms are associated with other negative health outcomes. IMPLICATIONS: ECIG use exposes users to chemicals that may have negative health impacts on the respiratory system. Limited research has examined the broad range of negative respiratory symptoms associated with e-cigarette use. This study identified that ECIG-cigarette users perceive their ECIG use to be associated with negative respiratory symptoms. Many e-cigarette user-reported negative respiratory symptoms are similar to those associated with cigarette smoking, though some appear unique to e-cigarette use. Future research should continue to monitor respiratory symptoms reported by ECIG users and whether these are associated with health outcomes over time.

Long-Term Quality of Life After Extracorporeal Membrane Oxygenation in ARDS Survivors: Systematic Review and Meta-Analysis.

PURPOSE: Extracorporeal membrane oxygenation (ECMO) is an increasingly prevalent treatment for acute respiratory failure (ARF). To evaluate the impact of ECMO support on long-term outcomes for critically ill adults with ARF. METHODS: We searched electronic databases 1948 through to November 30 2016; selected controlled trials or observational studies of critically ill adults with acute respiratory distress syndrome, examining long-term morbidity specifically health-related quality of life (HRQL); 2 authors independently selected studies, extracted data, and assessed methodological quality. ANALYSIS: Of the 633 citations, 1 randomized controlled trial and 5 observational studies met the selection criteria. Overall quality of observational studies was moderate to high (mean score on Newcastle-Ottawa scale, 7.2/9; range, 6-8). In 3 studies (n = 245), greater decrements in HRQL were seen for survivors of ECMO when compared to survivors of conventional mechanical ventilation (CMV) as measured by the Short Form 36 (SF-36) scores ([ECMO-CMV]: 5.40 [95% confidence interval, CI, 4.11 to 6.68]). As compared to CMV survivors, those who received ECMO experienced significantly less psychological morbidity (2 studies; n = 217 [ECMO-CMV]: mean weighted difference [MWD], -1.31 [95% CI, -1.98 to -0.64] for depression and MWD, -1.60 [95% CI, -1.80 to -1.39] for anxiety). CONCLUSIONS: Further studies are required to confirm findings and determine prognostic factors associated with more favorable outcomes in survivors of ECMO.

Influence of quality of intensive care on quality of life/return to work in survivors of the acute respiratory distress syndrome: prospective observational patient cohort study (DACAPO).

BACKGROUND: Significant long-term reduction in health-related quality of life (HRQoL) is often observed in survivors of the acute respiratory distress syndrome (ARDS), and return to work (RtW) is limited. There is a paucity of data regarding the relationship between the quality of care (QoC) in the intensive care unit (ICU) and both HRQoL and RtW in ARDS survivors. Therefore, the aim of our study was to investigate associations between indicators of QoC and HRQoL and RtW in a cohort of survivors of ARDS. METHODS: To determine the influence of QoC on HRQoL and RtW 1 year after ICU-discharge, ARDS patients were recruited into a prospective multi-centre patient cohort study and followed up regularly after discharge. Patients were asked to complete self-report questionnaires on HRQoL (Short Form 12 physical component scale (PCS) and mental component scale (MCS)) and RtW. Indicators of QoC pertaining to volume, structural and process quality, and general characteristics were recorded on ICU level. Associations between QoC indicators and HrQoL and RtW were investigated by multivariable linear and Cox regression modelling, respectively. B values and hazard ratios (HRs) are reported with corresponding 95% confidence intervals (CIs). RESULTS: 877 (of initially 1225 enrolled) people with ARDS formed the DACAPO survivor cohort, 396 were finally followed up to 1 year after discharge. The twelve-month survivors were characterized by a reduced HRQoL with a greater impairment in the physical component (Md 41.2 IQR [34-52]) compared to the mental component (Md 47.3 IQR [33-57]). Overall, 50% of the patients returned to work. The proportion of ventilated ICU patients showed significant negative associations with both 12 months PCS (B = - 11.22, CI -20.71; - 1,74) and RtW (HR = 0,18, CI 0,04;0,80). All other QoC indicators were not significantly related to outcome. CONCLUSIONS: Associations between ICU QoC and long-term HrQoL and RtW were weak and largely non-significant. Residual confounding by case mix, treatment variables before or during ICU stay and variables pertaining to the post intensive care period (e.g. rehabilitation) cannot be ruled out. TRIAL REGISTRATION: Clinicaltrials.govNCT02637011. (December 22, 2015, retrospectively registered).

Novel Risk Factors for Posttraumatic Stress Disorder Symptoms in Family Members of Acute Respiratory Distress Syndrome Survivors.

OBJECTIVES: Family members of ICU survivors report long-term psychologic symptoms of posttraumatic stress disorder. We describe patient- and family-member risk factors for posttraumatic stress disorder symptoms among family members of survivors of acute respiratory distress syndrome. DESIGN: Prospective cohort study of family members of acute respiratory distress syndrome survivors. SETTING: Single tertiary care center in Seattle, Washington. SUBJECTS: From 2010 to 2015, we assembled an inception cohort of adult acute respiratory distress syndrome survivors who identified family members involved in ICU and post-ICU care. One-hundred sixty-two family members enrolled in the study, corresponding to 120 patients. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Family members were assessed for self-reported psychologic symptoms 6 months after patient discharge using the Posttraumatic Stress Disorder Checklist-Civilian Version, the Patient Health Questionnaire 9-item depression scale, and the Generalized Anxiety Disorder 7-item scale. The primary outcome was posttraumatic stress disorder symptoms, and secondary outcomes were symptoms of depression and anxiety. We used clustered multivariable logistic regression to identify patient- and family-member risk factors for psychologic symptoms. Posttraumatic stress disorder symptoms were present in 31% (95% CI, 24-39%) of family participants. Family member risk factors for posttraumatic stress disorder symptoms included preexisting mental health disorders (adjusted odds ratio, 3.22; 95% CI, 1.42-7.31), recent personal experience of serious physical illness (adjusted odds ratio, 3.07; 95% CI, 1.40-6.75), and female gender (adjusted odds ratio, 5.18; 95% CI, 1.74-15.4). Family members of previously healthy patients (Charlson index of zero) had higher frequency of posttraumatic stress disorder symptoms (adjusted odds ratio, 2.25; 95% CI, 1.06-4.77). Markers of patient illness severity were not associated with family posttraumatic stress disorder symptoms. CONCLUSIONS: The prevalence of long-term posttraumatic stress disorder symptoms among family members of acute respiratory distress syndrome survivors is high. Family members with preexisting mental health disorders, recent experiences of serious physical illness, and family members of previously healthy patients are at increased risk for posttraumatic stress disorder symptoms.

Quality of Life and Lung Function in Survivors of Extracorporeal Membrane Oxygenation for Acute Respiratory Distress Syndrome.

BACKGROUND: Survivors of acute respiratory distress syndrome (ARDS) have long-term impairment of pulmonary function and health-related quality of life, but little is known of outcomes of ARDS survivors treated with extracorporeal membrane oxygenation. The aim of this study was to compare long-term outcomes of ARDS patients treated with or without extracorporeal membrane oxygenation. METHODS: A prospective, observational study of adults with ARDS (January 2013 to December 2015) was conducted at a single center. One year after discharge, survivors underwent pulmonary function tests, computed tomography of the chest, and health-related quality-of-life questionnaires. RESULTS: Eighty-four patients (34 extracorporeal membrane oxygenation, 50 non-extracorporeal membrane oxygenation) were studied; both groups had similar characteristics at baseline, but comorbidity was more common in non-extracorporeal membrane oxygenation (23 of 50 vs. 4 of 34, 46% vs. 12%, P < 0.001), and severity of hypoxemia was greater in extracorporeal membrane oxygenation (median PaO2/FIO2 72 [interquartile range, 50 to 103] vs. 114 [87 to 133] mm Hg, P < 0.001) and respiratory compliance worse. At 1 yr, survival was similar (22/33 vs. 28/47, 66% vs. 59%; P = 0.52), and pulmonary function and computed tomography were almost normal in both groups. Non-extracorporeal membrane oxygenation patients had lower health-related quality-of-life scores and higher rates of posttraumatic stress disorder. CONCLUSIONS: Despite more severe respiratory failure at admission, 1-yr survival of extracorporeal membrane oxygenation patients was not different from that of non-extracorporeal membrane oxygenation patients; each group had almost full recovery of lung function, but non-extracorporeal membrane oxygenation patients had greater impairment of health-related quality of life.

Screening for posttraumatic stress disorder in ARDS survivors: validation of the Impact of Event Scale-6 (IES-6).

BACKGROUND: Posttraumatic stress disorder (PTSD) symptoms are common in acute respiratory distress syndrome (ARDS) survivors. Brief screening instruments are needed for clinical and research purposes. We evaluated internal consistency, external construct, and criterion validity of the Impact of Event Scale-6 (IES-6; 6 items) compared to the original Impact of Event Scale-Revised (IES-R; 22 items) and to the Clinician Administered PTSD Scale (CAPS) reference standard evaluation in ARDS survivors. METHODS: This study is a secondary analysis from two independent multi-site, prospective studies of ARDS survivors. Measures of internal consistency, and external construct and criterion validity were evaluated. RESULTS: A total of 1001 ARDS survivors (51% female, 76% white, mean (SD) age 49 (14) years) were evaluated. The IES-6 demonstrated internal consistency over multiple time points up to 5 years after ARDS (Cronbach's alpha = 0.86 to 0.91) and high correlation with the IES-R (0.96; 95% confidence interval (CI): 0.94 to 0.97). The IES-6 demonstrated stronger correlations with related constructs (e.g., anxiety and depression; |r| = 0.32 to 0.52) and weaker correlations with unrelated constructs (e.g., physical function and healthcare utilization measures (|r| = 0.02 to 0.27). Criterion validity evaluation with the CAPS diagnosis of PTSD in a subsample of 60 participants yielded an area under receiver operating characteristic curve (95% CI) of 0.93 (0.86, 1.00), with an IES-6 cutoff score of 1.75 yielding 0.88 sensitivity and 0.85 specificity. CONCLUSIONS: The IES-6 is reliable and valid for screening for PTSD in ARDS survivors and may be useful in clinical and research settings.

Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure.

BACKGROUND: There is heterogeneity among the outcomes evaluated in studies of survivors of acute respiratory failure (ARF). AIM: To evaluate the importance of specific outcome domains to acute respiratory distress syndrome (ARDS) survivors, their family members and clinical researchers. METHODS: Nineteen outcome domains were identified from the National Institutes of Health's Patient Reported Outcomes Measurement Information System; WHO's International Classification of Functioning, Disability, and Health; Society of Critical Care Medicine's Post-Intensive Care Syndrome (PICS); as well as patient, clinician and researcher input. We surveyed ARDS survivors, family members and critical care researchers, 279 respondents in total, using a 5-point scale (strongly disagree, disagree, neutral, agree and strongly agree) to rate the importance of measuring each domain in studies of ARF survivors' postdischarge outcomes. MEASUREMENTS AND MAIN RESULTS: At least 80% of patients and family members supported (ie, rated 'agree' or 'strongly agree') that 15 of the 19 domains should be measured in all future studies. Among researchers, 6 of 19 domains were supported, with researchers less supportive for all domains, except survival (95% vs 72% support). Overall, four domains were supported by all groups: physical function, cognitive function, return to work or prior activities and mental health. CONCLUSION: Patient, family and researcher groups supported inclusion of outcome domains that fit within the PICS framework. Patients and family members also supported many additional domains, emphasising the importance of including patients/family, along with researchers, in consensus processes to select core outcome domains for future research studies.

Long-term outcome after the acute respiratory distress syndrome: different from general critical illness?

PURPOSE OF REVIEW: To review the current research data on long-term outcome and health-related quality of life in survivors of the acute respiratory distress syndrome (ARDS) and to compare these findings with those from non-ARDS patients surviving critical illness. RECENT FINDINGS: Between 6 months and 2 years after discharge from ICU, survivors of ARDS present with substantial impairments of the levels of body function (muscle strength, walking capacity and/or physical activity (physical SF-36 score). In contrast to non-ARDS patients from surgical ICUs, a standardized intensified physical therapy during early course of illness in ARDS patients could not show an improvement of long-term physical function performance. Furthermore, a substantial part of further ARDS patients suffer from depression (26-33%), anxiety (38-44%) or posttraumatic stress disorder (22-24%). In general, the level of functional autonomy and daily life activities was reduced, and in one study, 6 months after ICU-discharge this level was significantly lower in ARDS patients compared with non-ARDS patients. In a recent study, 44% of ARDS survivors were jobless 1 year after critical illness, whereas half of previously employed patients returned to work within 4 months after hospital discharge. General health-related quality of life was significantly reduced compared with a matched population in all studies. SUMMARY: Surviving ARDS is associated with a long-term substantial reduction in health-related quality of life and such a reduction does not differ from findings in patients surviving other critical illness. In further research, a special attention should be paid to prevention measures of the 'post intensive care syndrome' as well as to patient important domains, which might better explain the patient's and families' demands.

Factors associated with missed assessments in a 2-year longitudinal study of acute respiratory distress syndrome survivors.

BACKGROUND: To evaluate participant-related variables associated with missing assessment(s) at follow-up visits during a longitudinal research study. METHODS: This is a prospective, longitudinal, multi-site study of 196 acute respiratory distress syndrome (ARDS) survivors. More than 30 relevant sociodemographic, physical status, and mental health variables (representing participant characteristics prior to ARDS, at hospital discharge, and at the immediately preceding follow-up visit) were evaluated for association with missed assessments at 3, 6, 12, and 24-month follow-up visits (89-95% retention rates), using binomial logistic regression. RESULTS: Most participants were male (56%), white (58%), and ≤ high school education (64%). Sociodemographic characteristics were not associated with missed assessments at the initial 3-month visit or subsequent visits. The number of dependencies in Activities of Daily Living (ADLs) at hospital discharge was associated with higher odds of missed assessments at the initial visit (OR: 1.26, 95% CI: 1.12, 1.43). At subsequent 6-, 12-, and 24 months visits, post-hospital discharge physical and psychological status were not associated with subsequent missed assessments. Instead, the following were associated with lower odds of missed assessments: indicators of poorer health prior to hospital admission (inability to walk 5 min (OR: 0.46; 0.23, 0.91), unemployment due to health (OR: 0.47; 0.23, 0.96), and alcohol abuse (OR: 0.53; 0.28, 0.97)) and having the preceding visit at the research clinic rather than at home/facility, or by phone/mail (OR: 0.54; 0.31, 0.96). Inversely, variables associated with higher odds of missed assessments at subsequent visits include: functional dependency prior to hospital admission (i.e. dependency with > = 2 Instrumental Activities of Daily Living (IADLs) (OR: 1.96; 1.08, 3.52), and missing assessments at preceding visit (OR: 2.26; 1.35, 3.79). CONCLUSIONS: During the recovery process after hospital discharge, dependencies in physical functioning (e.g. ADLs, IADLs) prior to hospitalization and at hospital discharge were associated with higher odds of missed assessments. Conversely, other indicators of poorer health at baseline were associated with lower odds of missed assessments after the initial post-discharge visit. To reduce missing assessments, longitudinal clinical research studies may benefit from focusing additional resources on participants with dependencies in physical functioning prior to hospitalization and at hospital discharge.

Understanding patient outcomes after acute respiratory distress syndrome: identifying subtypes of physical, cognitive and mental health outcomes.

PURPOSE: With improving short-term mortality in acute respiratory distress syndrome (ARDS), understanding survivors' posthospitalisation outcomes is increasingly important. However, little is known regarding associations among physical, cognitive and mental health outcomes. Identification of outcome subtypes may advance understanding of post-ARDS morbidities. METHODS: We analysed baseline variables and 6-month health status for participants in the ARDS Network Long-Term Outcomes Study. After division into derivation and validation datasets, we used weighted network analysis to identify subtypes from predictors and outcomes in the derivation dataset. We then used recursive partitioning to develop a subtype classification rule and assessed adequacy of the classification rule using a kappa statistic with the validation dataset. RESULTS: Among 645 ARDS survivors, 430 were in the derivation and 215 in the validation datasets. Physical and mental health status, but not cognitive status, were closely associated. Four distinct subtypes were apparent (percentages in the derivation cohort): (1) mildly impaired physical and mental health (22% of patients), (2) moderately impaired physical and mental health (39%), (3) severely impaired physical health with moderately impaired mental health (15%) and (4) severely impaired physical and mental health (24%). The classification rule had high agreement (kappa=0.89 in validation dataset). Female Latino smokers had the poorest status, while male, non-Latino non-smokers had the best status. CONCLUSIONS: We identified four post-ARDS outcome subtypes that were predicted by sex, ethnicity, pre-ARDS smoking status and other baseline factors. These subtypes may help develop tailored rehabilitation strategies, including investigation of combined physical and mental health interventions, and distinct interventions to improve cognitive outcomes.

Perspectives on advance care planning among patients recently requiring non-invasive ventilation for acute respiratory failure: A qualitative study using thematic analysis.

BACKGROUND: Patients requiring non-invasive ventilation for acute-on-chronic respiratory failure due to chronic obstructive pulmonary disease or heart failure exacerbations may have a poor prognosis underscoring the importance of advance care planning. AIM: We aimed to describe attitudes to, and experiences of, discussing the future among patients recently treated with non-invasive ventilation. DESIGN: Qualitative research using thematic analysis. SETTINGS AND PARTICIPANTS: Tertiary teaching hospital. Patients with acute hypercapnic respiratory failure requiring non-invasive ventilation. RESULTS: Individuals recently treated with non-invasive ventilation describe feeling the future is beyond their control and instead controlled by their illness. Participants often recognised their poor prognosis but avoided discussing some difficult topics. The majority preferred not to undergo cardiopulmonary resuscitation but most had not discussed this with healthcare professionals. When participants voiced concerns about their future health to family members, they were met with polarised responses. Some encountered willingness for further discussion, while others met deflection, deterring further conversation. An overarching narrative of 'Looking through my illness to an uncertain but concerning future' unites these themes. CONCLUSION: This study suggests opportunities and barriers for advance care planning in individuals with chronic disease. Patients' understanding of their prognosis and their attitudes to cardiopulmonary resuscitation suggests an opportunity for advance care planning. Structuring discussions around patients' preferences for care during future exacerbations may foster a sense of control over the future despite illness. The diversity of familial responses to patients' concerns about their future health has implications for advance care planning. These findings have the potential to improve care for patients with respiratory failure and suggest an important ongoing research agenda.

Long-Term Pulmonary Function and Quality of Life in Children After Acute Respiratory Distress Syndrome: A Feasibility Investigation.

OBJECTIVES: To determine the feasibility of pulmonary function and quality of life evaluations in children after acute respiratory distress syndrome. DESIGN: A prospective follow-up feasibility study. SETTING: A tertiary PICU. PATIENTS: Children less than 18 years old with acute respiratory distress syndrome admitted between 2000 and 2005. INTERVENTION: Pulmonary function testing and patient and parental quality of life surveys approximately 12-month after acute respiratory distress syndrome. MEASUREMENTS AND MAIN RESULTS: One hundred eighty patients met acute respiratory distress syndrome criteria; 37 (20%) died, 90 (51%) declined participation, 28 (16%) consented but did not return, and 24 (13%) returned for follow-up visit. Twenty-three patients completed quality of life testing and 17 completed pulmonary functions. Clinical characteristics of those who returned were no different from those who did not except for age (median age, 4.9 vs 1.8 yr). One-third had mild to moderate pulmonary function deficits. Quality of life scores were marginal with general health perception, physical functioning, and behavior being areas of concern. These scores were lower than scores in children with chronic asthma. Parental quality of life assessments report lower scores in single-parent homes but no differences were noted by race or parental employment status. CONCLUSIONS: Valuable information may be discerned from acute respiratory distress syndrome patients who return for follow-up evaluation. In this pilot study, up to one-third of children with acute respiratory distress syndrome exhibit pulmonary function deficits and 12-month postillness quality of life scores are lower than in children with chronic asthma. Parental perceptions of postillness quality of life may be negatively impacted by socioeconomic constraints. Long-term follow of children with acute respiratory distress syndrome is feasible and bears further investigation.

Psychiatric Symptoms in Acute Respiratory Distress Syndrome Survivors: A 1-Year National Multicenter Study.

OBJECTIVE: To evaluate prevalence, severity, and co-occurrence of and risk factors for depression, anxiety, and posttraumatic stress disorder symptoms over the first year after acute respiratory distress syndrome. DESIGN: Prospective longitudinal cohort study. SETTINGS: Forty-one Acute Respiratory Distress Syndrome Network hospitals across the United States. PATIENTS: Six hundred ninety-eight acute respiratory distress syndrome survivors. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Psychiatric symptoms were evaluated by using the Hospital Anxiety and Depression Scale and Impact of Event Scale-Revised at 6 and 12 months. Adjusted prevalence ratios for substantial symptoms (binary outcome) and severity scores were calculated by using Poisson and linear regression, respectively. During 12 months, a total of 416 of 629 patients (66%) with at least one psychiatric outcome measure had substantial symptoms in at least one domain. There was a high and almost identical prevalence of substantial symptoms (36%, 42%, and 24% for depression, anxiety, and posttraumatic stress disorder) at 6 and 12 months. The most common pattern of co-occurrence was having symptoms of all three psychiatric domains simultaneously. Younger age, female sex, unemployment, alcohol misuse, and greater opioid use in the ICU were significantly associated with psychiatric symptoms, whereas greater severity of illness and ICU length of stay were not associated. CONCLUSIONS: Psychiatric symptoms occurred in two thirds of acute respiratory distress syndrome survivors with frequent co-occurrence. Sociodemographic characteristics and in-ICU opioid administration, rather than traditional measures of critical illness severity, should be considered in identifying the patients at highest risk for psychiatric symptoms during recovery. Given high co-occurrence, acute respiratory distress syndrome survivors should be simultaneously evaluated for a full spectrum of psychiatric sequelae to maximize recovery.

Psychometric properties of Patient Reported Outcome Measures (PROMs) in patients diagnosed with Acute Respiratory Distress Syndrome (ARDS).

BACKGROUND: The aim of this study was to assess the psychometric properties of the EQ-5D-3 L, the SF-12 v2 and its preference based derivative the SF-6D, and the St Georges Respiratory Questionnaire (SGRQ), in patients diagnosed with Acute Respiratory Distress Syndrome (ARDS). METHODS: Data from the Oscillation in ARDS (OSCAR) randomised unblinded clinical trial of 795 patients diagnosed with ARDS provided the foundation of this secondary psychometric analysis. The three source patient reported outcome measures (PROMs) (EQ-5D-3 L, SF-12 and SGRQ) were collected at both 6 and 12 months post randomisation. All measures were tested for acceptability, reliability, internal consistency, validity and responsiveness. Data from responders at 6 months was used to test for acceptability, reliability, known groups validity and internal responsiveness. Data from patients who responded at both 6 and 12 months was used to test for convergent validity and external responsiveness. RESULTS: Rates of response at both 6 and 12 months post randomisation were 89.88 % for the EQ-5D-3 L, 77.38 % for the SF-6D, 71.43 % for both the physical and mental components of the SF-12 and 38.10 % for the SGRQ. All measures had a Cronbach's Alpha statistic higher than 0.7. For known group's validity, there was no difference in mean summary or utility scores between known groups for all PROMs with minimal effect sizes. All three source measures showed strong convergent and discriminant validity. There was consistent evidence that the SF-6D is an empirically valid and efficient alternative to the EQ-5D-3 L. The EQ-5D-3 L and SGRQ were more responsive compared to the SF-12 and SF-6D with the EQ-5D-3 L generating greater effect sizes than the SGRQ. CONCLUSION: The PROMs explored in this study displayed varying psychometric properties in the context of ARDS. Further research should focus on shortening the SGRQ whilst still maintaining its psychometric properties and mapping between the SGRQ and preference-based measures for future application within economic evaluations of respiratory focused interventions. The selection ofa preferred PROM for evaluative studies within the ARDS context should ultimately depend on the relative importance placed on individual psychometric properties and the importance placed on generation of health utilities for economic evaluation purposes.