A Qualitative Investigation to Develop an Adapted Version of the EQ-5D-Y-3L for Use in Children Aged 2-4 Years.

OBJECTIVES: Few preference-weighted health-related quality-of-life measures exist for children under 5 years of age. Young children are substantial consumers of healthcare services. This project aims to assess EQ-5D-Y-3L's appropriateness in children aged 2 to 4 years and to coproduce with parents a suitable adaptation. METHODS: Purposive sampling at the Murdoch Children's Research Institute and Royal Children's Hospital was used to recruit parents or carers of children aged 2 to 4 years in Australia. Online focus groups were conducted consisting of 13 parents of healthy children, and 6 parents of children with moderate to severe health conditions. Parents provided feedback on each dimension of the proxy EQ-5D-Y-3L. Recordings were transcribed and thematic analysis was conducted. Qualitative findings guided the design of adaptations to the instrument. The adaptations were piloted to obtain feedback and refined to improve language translatability and comparability with other EuroQol instruments. RESULTS: The adapted EQ-5D-Y-3L was considered generally acceptable by the parents. Parents provided a wide range of examples of how each domain related to their children, with varied examples provided across ages 2 to 4 years and health status. Additional or alternative wording was suggested by parents to improve the applicability of the instrument to this age group. One example of this was the change of the domain wording "walking about" to "movement"-ID5:"In this age group, movement is more important than walking." CONCLUSIONS: The adapted EQ-5D-Y-3L has improved relevance for 2-4-year olds and appears easy to complete. Further testing of the adapted instrument is required to evaluate acceptability, reliability, and validity.

Inconsistent discharge diagnoses for young cardiac arrest episodes: insights from a statewide registry.

BACKGROUND: Administrative coding of out-of-hospital cardiac arrest (OHCA) is heterogeneous, with the prevalence of noninformative diagnoses uncertain. AIM: To characterize the prevalence and type of non-informative diagnoses in a young cardiac arrest population. METHODS: Hospital discharge diagnoses provided to a statewide OHCA registry were characterised as either 'informative' or 'noninformative.' Informative diagnoses stated an OHCA had occurred or defined OHCA as occurring due to coronary artery disease, cardiomyopathy, channelopathy, definite noncardiac cause, or no known cause. Noninformative diagnoses were blank, stated presenting cardiac rhythm only, provided irrelevant information or presented a complication of the OHCA as the main diagnosis. Characteristics of patients receiving informative versus noninformative diagnoses were compared. RESULTS: Of 1479 patients with OHCA aged 1 to 50 years, 290 patients were admitted to 15 hospitals. Ninety diagnoses (31.0%) were noninformative (arrest rhythm = 50, blank = 21, complication = 10 and irrelevant = 9). Two hundred diagnoses (69.0%) were informative (cardiac arrest = 84, coronary artery disease = 54, noncardiac diagnosis = 48, cardiomyopathy = 8, arrhythmia disorder = 4 and unascertained = 2). Only 10 diagnoses (3.5%) included both OHCA and an underlying cause. Patients receiving a noninformative diagnosis were more likely to have survived OHCA or been referred for forensic assessment (P = 0.011) and had longer median length of stay (9 vs 5 days, P = 0.0019). CONCLUSION: Almost one third of diagnoses for young patients discharged after an OHCA included neither OHCA nor any underlying cause. Underestimating the burden of OHCA impacts ongoing patient and at-risk family care, data sampling strategies, international statistics and research funding.

Causes, circumstances, and potential preventability of cardiac arrest in the young: insights from a state-wide clinical and forensic registry.

AIMS: The causes, circumstances, and preventability of young sudden cardiac arrest remain uncertain. METHODS AND RESULTS: A prospective state-wide multi-source registry identified all out-of-hospital cardiac arrests (OHCAs) in 1-50 year olds in Victoria, Australia, from 2019 to 2021. Cases were adjudicated using hospital and forensic records, clinic assessments and interviews of survivors and family members. For confirmed cardiac causes of OHCA, circumstances and cardiac history were collected. National time-use data was used to contextualize circumstances. 1319 OHCAs were included. 725 (55.0%) cases had a cardiac aetiology of OHCA, with coronary disease (n = 314, 23.8%) the most common pathology. Drug toxicity (n = 226, 17.1%) was the most common non-cardiac cause of OHCA and the second-most common cause overall. OHCAs were most likely to occur in sleep (n = 233, 41.2%). However, when compared to the typical Australian day, OHCAs occurred disproportionately more commonly during exercise (9% of patients vs. 1.3% of typical day, P = 0.018) and less commonly while sedentary (39.6 vs. 54.6%, P = 0.047). 38.2% of patients had known standard modifiable cardiovascular risk factors. 77% of patients with a cardiac cause of OHCA had not reported cardiac symptoms nor been evaluated by a cardiologist prior to their OHCA. CONCLUSION: Approximately half of OHCAs in the young have a cardiac cause, with coronary disease and drug toxicity dominant aetiologies. OHCAs disproportionately occur during exercise. Of patients with cardiac cause of OHCA, almost two-thirds have no standard modifiable cardiovascular risk factors, and more than three-quarters had no prior warning symptoms or interaction with a cardiologist.

Higher rates but similar causes of young out-of-hospital cardiac arrest in rural Australian patients.

OBJECTIVE: To determine whether young rural Australians have higher rates or different underlying causes of out-of-hospital cardiac arrest (OHCA). DESIGN: A case-control design identified patients experiencing an OHCA, then compared annual OHCA rates and underlying causes in rural versus metropolitan Victoria. OHCA causes were defined as either cardiac or non-cardiac, with specific aetiologies including coronary disease, cardiomyopathy, unascertained cause of arrest, drug toxicity, respiratory event, neurological event and other cardiac and non-cardiac. For OHCAs with confirmed cardiac aetiology, cardiovascular risk profiles were compared. SETTING: A state-wide prospective OHCA registry (combining ambulance, hospital and forensic data) in the state of Victoria, Australia (population 6.5 million). PARTICIPANTS: Victorians aged 1-50 years old experienced an OHCA between April 2019 and April 2020. MAIN OUTCOME MEASURES: Rates and underlying causes of OHCA in young rural and metropolitan Victorians. RESULTS: Rates of young OHCA were higher in rural areas (OHCA 22.5 per 100 000 rural residents vs. 13.4 per 100 000 metropolitan residents, standardised incidence ratio 168 (95% CI 101-235); confirmed cardiac cause of arrest 12.1 per 100 000 rural residents versus 7.5 per 100 000 metropolitan residents, standardised incidence ratio 161 (95% CI 71-251). The underlying causation of the OHCA and cardiovascular risk factor burden did not differ between rural and metropolitan areas. CONCLUSION: Higher rates of OHCA occur in young rural patients, with standardised incidence ratio of 168 compared to young metropolitan residents. Rural status did not influence causes of cardiac arrest or known cardiovascular risk factor burden in young patients experiencing OHCA.

Effect of multimorbidity on utilisation and out-of-pocket expenditure in Indonesia: quantile regression analysis.

BACKGROUND: Multimorbidity (the presence of two or more non-communicable diseases) is a major growing challenge for many low-income and middle-income countries (LMICs). Yet, its effects on health care costs and financial burden for patients have not been adequately studied. This study investigates the effect of multimorbidity across the different percentiles of healthcare utilisation and out-of-pocket expenditure (OOPE). METHODS: We conducted a secondary data analysis of the 2014/2015 Indonesian Family Life Survey (IFLS-5), which included 13,798 respondents aged ≥40 years. Poisson regression was used to assess the association between sociodemographic characteristics and the total number of non-communicable diseases (NCDs), while multivariate logistic regression and quantile regression analysis was used to estimate the associations between multimorbidity, health service use and OOPE. RESULTS: Overall, 20.8% of total participants had two or more NCDs in 2014/2015. The number of NCDs was associated with higher healthcare utilisation (coefficient 0.11, 95% CI 0.07-0.14 for outpatient care and coefficient 0.09 (95% CI 0.02-0.16 for inpatient care) and higher four-weekly OOPE (coefficient 27.0, 95% CI 11.4-42.7). The quantile regression results indicated that the marginal effect of having three or more NCDs on the absolute amount of four-weekly OOPE was smaller for the lower percentiles (at the 25th percentile, coefficient 1.0, 95% CI 0.5-1.5) but more pronounced for the higher percentile of out-of-pocket spending distribution (at the 90th percentile, coefficient 31.0, 95% CI 15.9-46.2). CONCLUSION: Multimorbidity is positively correlated with health service utilisation and OOPE and has a significant effect, especially among those in the upper tail of the utilisation/costs distribution. Health financing strategies are urgently required to meet the needs of patients with multimorbidity, particularly for vulnerable groups that have a higher level of health care utilisation.

The End Unexplained Cardiac Death (EndUCD) Registry for Young Australian Sudden Cardiac Arrest.

In 2019, the first multi-source registry of sudden cardiac arrest and death for patients aged 1-50 years launched in Victoria, Australia. Sudden cardiac arrest (SCA) affects approximately fifteen hundred younger Victorians per year. The End Unexplained Cardiac Death (EndUCD) Registry enrols SCA/death (D) cases aged 1-50 years, providing family screening, access to psychological support through clinical sites and creating a genetic biorepository for whole-genome sequencing. The registry will support clear pathways of cardiac assessment, epidemiological profiling and routine family screening and psychological support.

Psychometric Performance Comparison of the Adapted versus Original Versions of the EQ-5D-Y-3L and -Y-5L in Proxy Respondents for 2- to 4-Year-Olds.

INTRODUCTION: Few preference-weighted instruments are available to measure health-related quality of life in young children (2-4 years of age). The EQ-5D-Y-3L and EQ-5D-Y-5L were recently modified for this purpose. OBJECTIVE: The aim of this study was to test the psychometric properties of these adapted versions for use with parent proxies of children aged 2-4 years and to compare their performance with the original versions. It was hypothesised that the adapted instrument wording would result in improved psychometric performance. METHODS: Survey data of children aged 2-4 years were obtained from the Australian Paediatric Multi-Instrument Comparison study. Distributional and psychometric properties tested included feasibility, convergence, distribution of level scores, ceiling effects, known-group validity (Cohen's D effect sizes for prespecified groups defined by the presence/absence of special healthcare needs [SHCNs]), test-retest reliability (intraclass correlation coefficients [ICCs]), and responsiveness (standardised response mean [SRM] effect sizes for changes in health). Level sum scores were used to provide summary outcomes. Supplementary analysis using utility scores (from the Swedish EQ-5D-Y-3L value set) were conducted for the adapted and original EQ-5D-Y-3L, and no value sets were available for the EQ-5D-Y-5L. RESULTS: A total of 842 parents of children aged 2-4 years completed the survey. All instruments were easy to complete. There was strong convergence between the adapted and original EQ-5D-Y-3L and EQ-5D-Y-5L. The adapted EQ-5D-Y-3L and adapted EQ-5D-Y-5L showed more responses in the severe levels of the five EQ-5D-Y dimensions, particularly in the usual activity and mobility dimensions (EQ-5D-Y-5L: mobility level 1: adapted n = 478 [83%], original n = 253 [94%]; mobility level 4/5: adapted n = 17 [2.9%], original n = 4 [1.5%)]). The difference in the distribution of responses was more evident in children with SHCNs. Assessment of known-group validity showed a greater effect size for the adapted EQ-5D-Y-3L and adapted EQ-5D-Y-5L compared with the original instruments (EQ-5D-Y-5L: adapted Cohen's D = 1.01, original Cohen's D = 0.83) between children with and without SHCNs. The adapted EQ-5D-Y-3L and adapted EQ-5D-Y-5L showed improved reliability at 4-week follow-up, with improved ICCs (EQ-5D-Y-5L: adapted ICC = 0.83, original ICC = 0.44). The responsiveness of all instruments moved in the hypothesised direction for better or worse health at follow-up. Probability of superiority analysis showed little/no differences between the adapted and original EQ-5D-Y-3L and EQ-5D-Y-5L. Supplementary psychometric analysis of the adapted and original EQ-5D-Y-3L using utilities showed comparable findings with analyses using level sum scores. CONCLUSIONS: The findings suggest improved psychometric performance of the adapted version of the EQ-5D-Y-3L and EQ-5D-Y-5L in children aged 2-4 years compared with the original versions.

Sudden Cardiac Death in People With Schizophrenia: Higher Risk, Poorer Resuscitation Profiles, and Differing Pathologies.

BACKGROUND: People with schizophrenia account for approximately 1.0% of the population and seem to experience increased rates of sudden cardiac death (SCD). OBJECTIVES: This study sought to determine characteristics of increased SCD in people with schizophrenia. METHODS: The End Unexplained Cardiac Death (EndUCD) prospective state-wide registry compared people aged 15 to 50 years with and without schizophrenia who experienced SCD within a 2-year time period and were referred for forensic evaluation. RESULTS: We identified 579 individuals, of whom 65 (11.2%) had schizophrenia. Patients with schizophrenia were more commonly smokers (46.2% vs 23.0%; P < 0.0001), consumed excess alcohol (32.3% vs 21.4%; P = 0.05), and used QTc-prolonging medications (69.2% vs 17.9%; P < 0.0001). They were less likely to arrest while exercising (0.0% vs 6.4%; P = 0.04). Unfavorable arrest-related factors included lower rates of witnessed arrest (6.2% vs 23.5%; P < 0.0001), more likely to be found in asystole (92.3% vs 73.3%; P < 0.0001), and being more likely to be found as part of a welfare check after a prolonged period of time (median 42 hours vs 12 hours; P = 0.003). There was more frequent evidence of decomposition, and they more commonly underwent autopsy (41.2% vs 26.4%; P = 0.04 and 93.8% vs 82.5%; P = 0.05), with a diagnosis of nonischemic cardiomyopathy being more common (29.2% vs 18.1%; P = 0.04). CONCLUSIONS: People with schizophrenia account for 11% of young SCD patients referred for forensic investigations, exceeding population rates by 11-fold. They have a higher preexisting cardiac risk factor burden, unfavorable resuscitation profiles, and higher rates of nonischemic cardiomyopathy. Strategies targeting biopsychosocial support may deliver not only psychological benefits, but also help to decrease unwitnessed cardiac arrest.

Predictors and outcomes of in-hospital referrals for forensic investigation after young sudden cardiac death.

BACKGROUND: Forensic investigations are recommended following sudden cardiac death (SCD) to determine cause of death and identify living relatives at potential risk. Not all young SCD patients are referred to coronial services. OBJECTIVE: The purpose of this study was to identify referral rates, predictors, and outcomes of young SCD patients who die in-hospital following out-of-hospital cardiac arrest (OHCA). METHODS: A prospective 2-year analysis of in-hospital deaths following OHCA in Victoria, Australia, was conducted using a statewide registry combining data from ambulance, hospital, and forensic resources. RESULTS: OHCA caused 26.3% of all deaths (n = 1301) in Victorians aged 1-50 years. Rates of prehospital and in-hospital referral to coronial services were 95.0% and 59.5%, respectively. Factors independently predicting in-hospital coronial referral were age <40 years, death in the emergency department, and rural status (odds ratios 4.07, 8.91, and 3.43, respectively). Establishing a diagnosis of coronary disease in-hospital substantially reduced odds of coronial referral (odds ratio 0.07). Of 107 SCD patients referred to the coroner from hospitals, 25 (23.3%) had illicit substances identified on toxicologic analysis. Eighty-one patients (75.7%) underwent autopsy, with cause of death determined in 65 cases (80.2%). Sixteen deaths (19.8%) remained unascertained after autopsy and ancillary investigations. CONCLUSION: More than one-fourth of young Victorian deaths result from OHCA. Approximately half of patients dying in-hospital following OHCA are referred to the coroner. Patients referred are younger, more likely to die in the emergency department, and reside rurally. Forensic assessment identifies high rates of illicit drug use in young SCD patients and provides a definitive cause of death for most patients.

Factors predicting cardiac arrest in acute coronary syndrome patients under 50: A state-wide angiographic and forensic evaluation of outcomes.

BACKGROUND: An uncertain proportion of patients with acute coronary syndrome (ACS) also experience out-of-hospital cardiac arrest (OHCA). Predictors of OHCA in ACS remain unclear and vulnerable to selection bias as pre-hospital deceased patients are usually not included. METHODS: Data on patients aged 18-50 years from a percutaneous coronary intervention (PCI) and OHCA registry were combined to identify all patients experiencing OHCA due to ACS (not including those managed medically or who proceeded to cardiac surgery). Clinical, angiographic and forensic details were collated. In-hospital and post-discharge outcomes were compared between OHCA survivors and non-OHCA ACS patients. RESULTS: OHCA occurred in 6.0% of ACS patients transported to hospital and 10.0% of all ACS patients. Clinical predictors were non-diabetic status (p = 0.015), non-obesity (p = 0.004), ST-elevation myocardial infarction (p < 0.0001) and left main (p < 0.0002) or left anterior descending (LAD) coronary artery (p < 0.0001) as culprit vessel. OHCA patients had poorer in-hospital clinical outcomes, including longer length of stay and higher pre-procedural intubation, cardiogenic shock, major adverse cardiovascular events, bleeding, and mortality (p < 0.0001 for all). At 30 days, OHCA survivors had equivalent cardiac function and return to premorbid independence but higher rates of anxiety/depression (p = 0.029). CONCLUSION: OHCA complicates approximately 10% of ACS in the young. Predictors of OHCA are being non-diabetic, non-obese, having a STEMI presentation, and left main or LAD coronary culprit lesion. For OHCA patients surviving to PCI, higher rates of in-hospital complications are observed. Despite this, recovery of pre-morbid physical and cardiac function is equivalent to non-OHCA patients, apart from higher rates of anxiety/depression.

Obesity in young sudden cardiac death: Rates, clinical features, and insights into people with body mass index >50kg/m2.

Objective: To contextualize obesity rates in young sudden cardiac death (SCD) against the age-matched national population, and identify clinical and pathologic features in WHO class II and III obesity. Methods: A prospective state-wide out-of-hospital cardiac arrest registry included all SCDs in Victoria, Australia from 2019-2021. Body mass indices (BMIs) of patients 18-50 years were compared to age-referenced general population. Characteristics of SCD patients with WHO Class II obesity (BMI ≥30kg/m2) and non-obesity (BMI<30kg/m2) were compared. Clinical characteristics of people with BMI>50kg/m2 were assessed. Results: 504 patients were included. Obesity was strongly over-represented in young SCD compared to the age-matched general population (55.0% vs 28.7%, p<0.0001). Obese SCD patients more frequently had hypertension, diabetes and obstructive sleep apnoea (p<0.0001, p=0.009 and p=0.001 respectively), ventricular fibrillation as their arrest rhythm (p=0.008) and left ventricular hypertrophy (LVH) (p<0.0001). Obese patients were less likely to have toxicology positive for illicit substances (22.0% vs 32.6%, p=0.008) or history of alcohol abuse (18.8% vs 26.9%, p=0.030). Patients with BMI>50 kg/m2 represented 8.5% of young SCD. LVH (n=26, 60.5%) was their predominant cause of death and only 10 (9.3%) patients died from coronary disease. Conclusion: Over half of young Australian SCD patients are obese, with all obesity classes over-represented compared to the general population. Obese patients had more cardiac risk factors. Almost two thirds of patients with BMI>50 kg/m2 died from LVH, with fewer than 10% dying from coronary disease.

Prevalence of Coronary Artery Anomalies in Young and Middle-Aged Sudden Cardiac Death Victims (from a Prospective State-Wide Registry).

Coronary artery anomalies (CAAs) have been previously implicated as a major cause of young sudden cardiac death (SCD), particularly in exercise-related SCD, with a prevalence of up to 33%. A state-wide prospective out-of-hospital cardiac arrest registry identified all patients aged 1 to 50 years who experienced an SCD and underwent autopsy from April 2019 to April 2021. Rates of normal anatomy, normal variants, and CAAs were identified, and circumstances and causes of death for patients with CAAs examined. Of 1,477 patients who experienced cardiac arrest during the study period, 490 underwent autopsy and were confirmed to have experienced SCD. Of these 490 patients, 5 (1%) had a CAA identified, with 3 having anomalies of coronary origin and 2 having anomalies of coronary course. In no cases were the CAA deemed responsible for the SCD. In 2 cases, severe coronary disease and intra-coronary thrombus with histological evidence of acute myocardial infarction were identified. In the third, critical coronary disease was found, the fourth had an unrelated thoracic aortic dissection, and the fifth had cardiomegaly in the setting of illicit drug use. Of 27 patients who experienced their SCD during exercise, only 1 had a CAA identified (the patient with thoracic aortic dissection). In conclusion, in this prospective cohort of consecutive young patients with SCD who underwent autopsy, CAAs occurred in 1% of patients and did not cause any deaths. The role of CAAs in causing young and middle-aged SCD appears to be less significant than previously hypothesized.

The Prevalence of Metabolic Disease Multimorbidity and Its Associations With Spending and Health Outcomes in Middle-Aged and Elderly Chinese Adults.

Objective: Metabolic diseases have been a clinical challenge worldwide and a major public health issue. Very few studies from China investigated the impact of metabolic multimorbidity on healthcare and health outcomes at the national level. This study aims to examine the association of metabolic multimorbidity with health service utilization, spending, functional and mental health. Materials and Methods: This is a nationally representative cross-sectional study, utilizing the data from the China Health and Retirement Longitudinal Study in 2015, including 11,377 participants aged 45 years and older. Multivariable regression models were used to assess the association of metabolic multimorbidity with healthcare, out-of-pocket expenditure (OOPE), the activities of daily living (ADL) limitation, the instrumental activities of daily living (IADL) limitation, and depression. Results: Overall, 30.50% of total participants had metabolic multimorbidity in 2015 in China. Compared with single disease, metabolic multimorbidity were associated with the number of outpatient visits [incident rate ratio (IRR) = 1.30, 95% CI = 1.05, 1.62] and days of inpatient care (IRR = 1.52, 95% CI = 1.28, 1.81). Metabolic multimorbidity was positively associated with the OOPE on outpatient care (coefficient = 82.99, 95% CI = 17.70, 148.27) and physical functional difficulties, including ADL limitation (odds ratio = 1.36, 95% CI = 1.18, 1.57). Conclusions: Metabolic multimorbidity is associated with higher levels of health-care service use, greater expenditure for outpatient care, and more difficulties in ADL among Chinese adults. China's health-care systems need to shift from single-disease models to new financing and service delivery models to effectively manage metabolic multimorbidity.

The economic impact of sudden cardiac arrest.

BACKGROUND: There are 20,000 sudden cardiac arrests (SCAs) in Australia annually, with 90% case-fatality. OBJECTIVE: The present study calculated both the health and economic impact of SCAs in Victoria, Australia. METHODS: Data on all SCAs attended by Ambulance Victoria from July 2017 to June 2018 were collected regarding age, gender, and survival to hospital, discharge and 12 months. Pre-SCA employment status of all patients was modelled using age and gender-matched Australian economic data. A Markov state-transition model with a five-year horizon calculated health and economic impact in years of life lived (YLL), productivity-adjusted life years (PALYs) and gross domestic product (GDP) lost. A counterfactual Markov state-transition model assessed outcomes of an identical cohort of patients who did not experience SCA. All values were discounted by 5%. RESULTS: In 12 months, 4637 people suffered SCAs in Victoria, of whom 1516 (32.7%) were working at the time. 695 patients (15.0%) survived to hospital, 325 (7.0%) to discharge, and 303 (6.5%) to 12 months. In five years following their SCA, the cohort lost 15,922 years of life and 2327 PALYs. Reduced productivity led to GDP losses of AUD$448 million (92.8% relative reduction). Extrapolated to the 20,000 SCAs occurring across all of Australia, total GDP losses approached AUD$2 billion. CONCLUSION: The health and economic burden of SCAs is high, predominantly underpinned by very high mortality. Annual national losses approach AUD$2 billion (USD$1.42 billion) and are comparable to productivity losses from all cancers combined. Prioritising research and state-of-the-art care for SCA patients appears economically sound.