Introduction: Western HealthLinks, an integrated care chronic illness management program, supported patients with chronic and complex conditions to stay well at home after hospital discharge. This study assessed patients’ experiences of the program.Methods: A prospective mixed-methods observational cohort study, conducted as an implementation evaluation with six-monthly assessments over 30 months included: A visual analogue scale (VAS) rating healthcare satisfaction; an Assessment of Quality of Life 4 Dimensions (AQoL4D) tool; a survey regarding healthcare satisfaction. VAS and AQoL4D were analysed with a simple random effects model using time as a linear variable; survey was analysed with thematic analysis.Results: Median baseline VAS was 79 and AQoL4D 0.15, with no evidence for change over time. Themes across timepoints included: Local/home-based care; hospital access; individualised, coordinated and consistent care; communication; reduced waiting; healthcare provider qualities; transport/parking.Discussion: No evidence of change to VAS and AQoL4D suggests maintained healthcare satisfaction and QoL over time despite increasing age and disease burden. Surveys showed patients value integrated care. Limitations include the absence of control group and loss to follow-up with risk of bias for VAS and AQoL4D.Conclusion: Western HealthLinks patients maintained healthcare satisfaction and QoL over time after hospital discharge. Patients value integrated care and future models of care may benefit from incorporation of themes from analysis.

Abstract Background Chronic kidney disease (CKD), type 2 diabetes (T2D) and cardiovascular disease cause substantial morbidity and mortality. Our earlier randomised stepped-wedge trial targeted these conditions using an electronic technology audit tool combined with benchmarking, education, monitoring and support to general practices. This study aimed to determine if changes seen in the original trial persisted 12 months later. Methods The study commenced at completion of the original 80-week trial. Practices received: final training session, resource folder, ongoing electronic technology tool access; other intervention components were withdrawn. Active patients (≥3 visits within last 24 months) aged ≥ 18 years within eight practices were included. Pre-defined variables from the original trial for which the credible interval (CI) did not include one, as well as two additional variables were re-assessed 12 months later. De-identified data were analysed using R version 3.5.1 with Bayesian generalised linear mixed model with practice specific random intercept and linear slope for time. Net effect odds ratio (OR) reflects the combined outcome of the original trial and subsequent follow-up period. Results 37,813 patients were included at study end. Net OR and 95% CI showed: increased CKD diagnostic testing in those at risk (OR 1.4, CI 1.2–1.6), increased coded CKD diagnosis (OR 1.9, CI 1.6–2.2) and increased uACR testing in patients with T2D (OR 1.9, CI 1.4–2.5). When considering the proportion of patients with CKD on recommended management among all active patients aged ≥ 18 years, there were also increased patients with CKD prescribed ACEI/ARBs (OR 1.8, CI 1.5–2.3) and prescribed statins (OR 1.8, CI 1.4–2.2). There was no sustained increase in T2D diagnostic testing in those at risk. Conclusions Improvements strengthened in five areas including three out of four pre-defined variables that improved in the original trial and two additional variables that also showed improvement in the original trial, suggesting lasting benefits with ongoing electronic technology tool access. Further investigation incorporating control practices and qualitative research investigating which components best promote long-term changes would be beneficial. Registration number ACTRN12617000335392. Date registered: 3 March 2017.

OBJECTIVE: Differences in socioeconomic status (SES) may influence long-term physical, psychological, and cognitive health outcomes of ICU survivors. However, the relationship between SES and these three long-term health outcomes is rarely studied. The aim of this study was to investigate associations between SES and the occurrence of long-term outcomes 1-year post-ICU. DESIGN: Prospective cohort study. SETTING: Seven Dutch ICUs. PATIENTS: Patients 16 years old or older and admitted for greater than or equal to 12 hours to the ICU between July 2016 and March 2020 completed questionnaires, or relatives if patients could not complete them themselves, at ICU admission and 1 year after ICU admission. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Validated scales were used for the outcomes: physical problems (fatigue or >= 3 new physical symptoms), psychological problems (anxiety, depression, or post-traumatic stress), cognitive impairment, and a composite score. Occurrence of outcomes were calculated for: origin, education level, employment status, income, and household structure. Adjusted odds ratios (aORs) were calculated with covariates age, gender, admission type, severity-of-illness, and pre-ICU health status. Of the 6555 patients included, 3246 (49.5%) completed the questionnaires at admission and after 1 year. Low education level increased the risk of having health problems in the composite score 1-year post-ICU (aOR 1.84; 95% CI, 1.39-2.44; p < 0.001). Pre-ICU unemployment increased the risk of having physical problems (aOR 1.98; 95% CI, 1.31-3.01; p = 0.001). Migrants and low income was associated with more psychological problems (aOR 2.03; 95% CI, 1.25-3.24; p < 0.01; aOR 1.54; 95% CI, 1.10-2.16; p = 0.01, respectively), and unpaid work with less psychological (aOR 0.26; 95% CI, 0.08-0.73; p = 0.02) and cognitive (aOR 0.11; 95% CI, 0.01-0.59; p = 0.04) problems. CONCLUSIONS: Indicators of lower SES, including low education level, low income, unemployment and migrants were associated with an increased risk of post-ICU health problems. Gaining insight into the complex relationship between SES and long-term health problems is necessary to decrease disparities in healthcare.

OBJECTIVES: To explore associations between the physical, cognitive, and mental post-intensive care syndrome (PICS) health domains with changes in health-related quality of life (HRQoL) following ICU admission. DESIGN: A longitudinal prospective multicenter cohort study. SETTING/PATIENTS: Patients (n = 4092) from seven Dutch ICUs. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: At ICU admission, 3 and 12 months post-ICU, patients completed validated questionnaires regarding physical health problems, cognitive health problems, mental health problems, and HRQoL. Composite scores were created for the physical health domain (physical problems and fatigue) and mental health domain (anxiety, depression, and post-traumatic stress disorder). Adjusted multivariable linear regression analyses were performed, including covariables (e.g., patient characteristics, disease severity, pre-ICU HRQoL, etc.) to explore associations between the physical, cognitive, and mental health domains of PICS and changes in HRQoL at 3 and 12 months post-ICU. At 3 months (n = 3368), physical health problems (beta = -0.04 [95% CI, -0.06 to 0.02]; p < 0.001), cognitive health problems (beta = -0.05 [95% CI, -0.09 to -0.02]; p < 0.001), and mental health problems (beta = -0.08 [95% CI, -0.10 to -0.05]; p < 0.001) were negatively associated with changes in HRQoL. Also, at 12 months (n = 2950), physical health problems (beta = -0.06 [95% CI, -0.08 to -0.03]; p < 0.001), cognitive health problems (beta = -0.04 [95% CI, -0.08 to -0.01]; p < 0.015), and mental health problems (beta = -0.06 [95% CI, -0.08 to -0.03]; p < 0.001) were negatively associated with changes in HRQoL. CONCLUSIONS: PICS symptoms in the physical, cognitive, and mental domains are all negatively associated with changes in HRQoL at 3 and 12 months post-ICU. At 3 months, PICS symptoms in the mental domain seem to have the largest negative associations. At 12 months, the associations of PICS in the mental and physical domains are the same. This implies that daily ICU care and follow-up care should focus on preventing and mitigating health problems across all three PICS domains to prevent a decrease in HRQoL.

BACKGROUND:Measuring patient-reported outcome measures (PROMs) is essential for improving intensive care medicine, but it is challenging and prone to bias. This study investigates the representativeness of a multicenter, PROM-based cohort of intensive care unit (ICU) survivors. METHODS:Demographic, clinical, and ICU admission characteristics of the multicenter, PROM-based cohort (n = 6 ICUs) were compared to those of all ICU survivors in Dutch hospitals (n = 73 ICUs), in the years 2019 and 2022, based on data from the National Intensive Care Evaluation registry. RESULTS:Comparison between the PROM-based cohort (n = 2454) and the national registry cohort (n = 89 154) revealed predominantly similarities in demographic, clinical, and ICU admission characteristics. Nevertheless, ICU survivors in the PROM-based cohort had a higher severity of illness (59 vs. 56 points) and mortality probability (19% vs. 16%), were more often mechanically ventilated during the first 24 h after ICU admission (49% vs. 34%), had higher ICU and hospital lengths of stay (respectively, 4.7 vs. 3.6 days, and 16 vs. 14 days), and lower mortality rates in-hospital and at 3, 6, and 12 months after ICU admission (respectively, 1.4% vs. 4.6%, 4.2% vs. 10%, 6.2% vs. 13%, and 9.2% vs. 17%). CONCLUSION:ICU survivors in the PROM-based cohort share similar demographic, clinical, and ICU admission characteristics with the national ICU population. However, severity of illness, lengths of stay, and mortality rates deviate from the national registry cohort. These findings highlight external validity concerns, urging researchers and policymakers to consider this when using outcome data from a PROM-based cohort.

Rationale: Despite functional impairments, intensive care unit (ICU) survivors can perceive their quality of life as acceptable. Objectives: To investigate discrepancies between calculated health, based on self-reported physical, mental, and cognitive functioning and perceived health, 1 year after ICU admission. Methods: Data from an ongoing prospective multicenter cohort study, MONITOR-IC, were used. Patient-reported physical, mental, and cognitive functioning and perceived health (EuroQol visual analog scale; range, 0-100) 1 year post-ICU of patients admitted to 1 of 11 participating ICUs between July 2016 and September 2021 were analyzed. The relationship between functional outcomes and perceived health was modeled using linear regression. Calculated health for each patient was estimated using this model and compared with patients' perceived health, the difference reflecting a discrepancy. On the basis of a minimal clinically important difference of 8 points, three groups were defined: patients who rated their health better than calculated (positive discrepancy), patients who rated their health worse than calculated (negative discrepancy), and patients whose perceived health was concordant with their calculated health. Results: A total of 2,545 patients were analyzed, of whom 45.0% (n = 1,146) showed a discrepancy between calculated and perceived health. Patients with a negative discrepancy rated their health significantly lower (median, 50; interquartile range, 36-66) than patients with a positive discrepancy (median, 84; interquartile range, 75-90). Importantly, there were no significant differences in physical, mental, and cognitive functioning between patients with a negative versus positive discrepancy. Patients with a negative discrepancy had a higher education level and were more often unemployed. Conclusions: One year post-ICU, almost half of ICU survivors showed a discrepancy between calculated health and perceived health.

To evaluate the effect of discussing personalized predictions of long-term quality of life (QoL) on patient and family experiences and outcomes, and on experiences of ICU clinicians. We conducted a randomized clinical trial in two Dutch hospitals, assigning adult ICU patients to receive usual care or the intervention: discussing the expected long-term QoL based on a validated prediction model, during a family meeting in the ICU. Primary outcome was patient and family experience with shared decision-making (CollaboRATE, range 0–100), evaluated < 3 days after the family meeting. Secondary outcomes included ICU professionals’ experiences (Collaboration and Satisfaction about Care Decisions [CSACD] and Ethical Decision-Making Climate Questionnaire [EDMCQ]), symptoms of anxiety and depression among patients and family, and patients’ QoL 3 months and 1 year post-ICU. 160 patients were included, of whom 81 were randomized to receive the intervention and 79 to receive usual care. No significant differences were seen in patients’ and family members’ experiences (median CollaboRATE score 89 [IQR 85–100] in the intervention arm vs 93 [IQR 85–100] in the usual care arm, p = 0.6). The outcomes of patients did not differ, whereas at 1 year post-ICU family members in the usual care group reported a larger increase in depression symptoms (mean 2.3 [SD 4.2] vs 0.2 [SD 3.9], p = 0.04). Regarding ICU professionals’ experiences, an improvement in CSACD score was observed post-intervention (median 40 [IQR 34–45] vs 37 [IQR 32–43], p = 0.01), while no significant change in EDMCQ was found. Incorporating personalized predictions of long-term QoL in family meetings had no measurable effect on patients’ and family members’ experiences. However, a positive effect on family members’ symptoms of depression and ICU professionals’ experienced collaboration was observed. This study was registered at ClinicalTrials.gov: NCT05155150.

OBJECTIVES:After ICU admission, the quality of life (QoL) of ICU survivors is often significantly lower compared to their peers. However, recent studies showed that this impaired QoL cannot be fully explained by the physical, mental, and cognitive problems post-ICU, alluding to other determinants of QoL. Therefore, we aimed to explore ICU survivors' experienced QoL 1-2 years post-ICU, focusing on factors beyond functional outcomes. DESIGN:Qualitative interview study. SETTING:Seven hospitals in the Netherlands. PATIENTS:ICU survivors aged greater than or equal to 16 years admitted to the ICU between July 2022 and January 2023. INTERVENTIONS:None. MEASUREMENTS AND MAIN RESULTS:ICU patients were purposively sampled. Interviews were audiotaped, transcribed, and analyzed according to the principles of thematic content analysis. All interviews were coded independently by two researchers and participant recruitment was continued until no new themes were identified. Twenty-four semistructured interviews were performed between March and June 2024. The interviews resulted in 28 categories, from which seven main themes emerged regarding patients' experienced QoL: functional impairments (e.g., physical problems), participation (e.g., independence, work), support (e.g., informal care), environment (e.g., financial resources, personal circumstances), individual values (e.g., perspective on life, religion), comparison (e.g., expectations, reference), and coping (e.g., adaptation, acceptance). Patients described how these themes affected their QoL, both positively and negatively. CONCLUSIONS:This study shows that perceived QoL after critical illness is impacted not only by patients' functional impairments but also by participation, support, environment, individual values, comparison, and coping. The themes identified in this study stress the importance of considering patients' individual and context factors to provide optimal post-ICU support.

Objective: To compare potentially preventable hospitalisation (PPH) rates and types of conditions for Aboriginal children by exposure to out-of-home care (OOHC) and estimate the effect of first OOHC placement on PPH rates. Methods: A retrospective longitudinal study of linked hospitalisation and child protection data for a matched cohort of Aboriginal children born in Western Australia between 2000 and 2013 using observed and predicted rates. Results: Incidence rate of PPH bed days was 2.3 times higher for children ever-placed in OOHC than never-placed children. Diagnosed conditions showed no difference between ever and never-placed children across all ages. On average, PPH bed days reduced by 11% (95% confidence interval: 3% to 18%) following the first OOHC placement but never reached parity with never-placed children. For dental and otitis media-related PPHs, rates increased following first placement. Conclusions: Children with experience of OOHC had greater rates of PPH bed days which persisted despite reductions following first OOHC placement. Implications for Public Health: Healthcare system capacity, cultural safety, and access, as well as the material conditions of families at risk of CPS intervention, all need to be improved if rates of PPHs are to be reduced.

Currently, there is a nationwide outbreak of Mycoplasma pneumoniae infections. M. pneumoniae is a bacterium that can cause atypical pneumonia, especially in children and young adults, and does not respond to the standard antibiotics prescribed for pneumonia. In addition, the bacterium regularly causes extra-pulmonary symptoms. In our hospitals, we have admitted 100 patients (including 20 children) with M. pneumoniae since the fall of 2023, many of which were young and had severe clinical symptoms. It is important to recognize the clinical picture to start effective antibiotic treatment. In this clinical lesson, we will provide two examples of recently admitted patients and discuss the characteristics of all inpatients who have presented to our hospitals during this epidemic. Finally, we pay attention to antibiotic policy and antibiotic resistance.

The prognosis for locked-in syndrome after acquired brainstem injury is unfavourable. However, partial recovery of motor function occurs in many patients and benefits from intensive rehabilitation. Here we evaluate two patient cases and results of a questionnaire among medical doctors specialised in rehabilitation. We define bottlenecks in the treatment of acute locked-in syndrome in the ICU. Locked-in patients have a years-long life expectancy once they have survived the acute phase. There is no validated prognostic instrument to predict recovery, but even small neurological recovery can have large functional benefits. Recovery may take place over an extended period of time, up to years after onset. To unlock the potential to recover we recommend to start with early rehabilitation while the patient is still in the ICU on life sustaining treatment This may set the patient off along the road from locked-in to unlocked.

With survival rates of critical illness increasing, quality of life measures are becoming an important outcome of ICU treatment. Therefore, to study the impact of critical illness on quality of life, we explored quality of life before and 1 year after ICU admission in different subgroups of ICU survivors. Data from an ongoing prospective multicenter cohort study, the MONITOR-IC, were used. Patients admitted to the ICU in one of eleven participating hospitals between July 2016 and June 2021 were included. Outcome was defined as change in quality of life, measured using the EuroQol five-dimensional (EQ-5D-5L) questionnaire, and calculated by subtracting the EQ-5D-5L score 1 day before hospital admission from the EQ-5D-5L score 1 year post-ICU. Based on the minimal clinically important difference, a change in quality of life was defined as a change in EQ-5D-5L score of ≥ 0.08. Subgroups of patients were based on admission diagnosis. A total of 3913 (50.6

Background Young carers are people aged up to 25 years who provide unpaid care to a relative or a friend living with a long-term condition or a disability. Providing informal care is associated with poor mental health. Longitudinal evidence on this relationship among young people is scarce. To address this gap, we assessed the mental health of people aged 15-25 years when providing informal care compared with when not providing informal care. Methods We conducted a population-based longitudinal study using 20 years of data between 2001 and 2020 from the Household Income and Labour Dynamics in Australia (HILDA) survey. We included observations of participants aged 15-25 years with at least two observations across 20 waves of HILDA. Informal care was categorised as 0 h per week, 1-19 h per week, and 20 or more h per week. Mental health was measured using the Mental Health Inventory (MHI-5) from the 36-Item Short Form Survey (SF-36). Multivariate linear fixed-effects regression models were fitted to assess within-person changes in mental health when providing different levels of informal care. Findings Of 44 663 people with 410 658 observations who participated in HILDA waves 1 to 20, 32 726 were excluded with 351 445 observations. 11 937 young people (with 59 213 observations) were deemed eligible for this study and, of these, 8996 participants with 43 231 observations were included in the complete case analytical sample. When caring for 1-19 h per week, young carers had an MHI-5 score of -1 center dot 98 points (95% CI -3 center dot 06 to -0 center dot 89) compared with when caring for 0 h per week. Mental health was worse when caring for 20 or more h per week, with participants displaying an MHI-5 score of -3 center dot 47 points (95% CI -6 center dot 02 to -0 center dot 92) compared with when caring for 0 h per week. Our findings were consistent across sensitivity tests. Interpretation Our findings suggest potential mental health effects of informal care in young people, particularly when providing an intense amount of caregiving. Reducing young caring loads could be a possible avenue for intervention. Copyright (c) 2024 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 license.

OBJECTIVES: ICU survivors often suffer from long-lasting physical, mental, and cognitive health problems after hospital discharge. As several interventions that treat or prevent these problems already start during ICU stay, patients at high risk should be identified early. This study aimed to develop a model for early prediction of post-ICU health problems within 48 hours after ICU admission. DESIGN: Prospective cohort study in seven Dutch ICUs. SETTING/PATIENTS: ICU patients older than 16 years and admitted for greater than or equal to 12 hours between July 2016 and March 2020. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Outcomes were physical problems (fatigue or >= 3 new physical symptoms), mental problems (anxiety, depression, or post-traumatic stress disorder), and cognitive impairment. Patient record data and questionnaire data were collected at ICU admission, and after 3 and 12 months, of 2,476 patients. Several models predicting physical, mental, or cognitive problems and a composite score at 3 and 12 months were developed using variables collected within 48 hours after ICU admission. Based on performance and clinical feasibility, a model, PROSPECT, predicting post-ICU health problems at 3 months was chosen, including the predictors of chronic obstructive pulmonary disease, admission type, expected length of ICU stay greater than or equal to 2 days, and preadmission anxiety and fatigue. Internal validation using bootstrapping on data of the largest hospital (n = 1,244) yielded a C-statistic of 0.73 (95% CI, 0.70-0.76). External validation was performed on data (n = 864) from the other six hospitals with a C-statistic of 0.77 (95% CI, 0.73-0.8 0). CONCLUSIONS: The developed and externally validated PROSPECT model can be used within 48 hours after ICU admission for identifying patients with an increased risk of post-ICU problems 3 months after ICU admission. Timely preventive interventions starting during ICU admission and follow-up care can prevent or mitigate post-ICU problems in these high-risk patients.

Objective To identify additional mental and neurodevelopmental health needs of Aboriginal children born in Western Australia, who are placed in out-of-home care (OOHC), relative to Aboriginal children born in Western Australia who were not placed. Methods Data-linkage of hospitalisations, health registries and child protective services data for all Aboriginal children born in WA between 2000 and 2013 was used. Children placed in out-of-home care between 2000 and 2019 were matched to children never placed and prevalence and cumulative incidence estimates of mental and neurodevelopmental health conditions were compared. Results Children placed in out-of-home care had a three times greater prevalence of mental and neurodevelopmental health conditions generally. The prevalence of foetal alcohol spectrum disorder was ten times higher, and post-traumatic stress disorder was seven times higher for those placed in out-of-home care. Cumulative incidence plots highlighted for different conditions the ages at which the rate of diagnosis diverges between the two groups. Conclusions Children placed in out-of-home care had greater mental and neurodevelopmental health needs generally when compared to children never placed in out-of-home care . Implications for Public Health Child protective services must ensure culturally safe, comprehensive, wrap-around services for Aboriginal children and their families are provided. Approaches should build on the strength of children, families and culture and avoid stigmatising children and their parents.

Purpose To determine differences in one-year multi-domain health outcomes in COVID-19 and non-COVID-19 intensive care unit (ICU) survivors. Materials and methods Adult ICU survivors treated for COVID-19 were compared to a control group consisting of survivors admitted for respiratory distress due to other causes, i.e. non-COVID-19 ARDS or pneumonia. Occurrence of physical (frailty, fatigue, physical symptoms), mental (anxiety, depression, post-traumatic stress) and cognitive symptoms, and quality of life (QoL) scores were measured, using validated questionnaires, before and one year after ICU treatment. Results In total, 506 COVID-19 survivors could be compared to 228 non-COVID-19 survivors. At one-year follow-up, COVID-19 ICU survivors had less physical (76.2% vs. 86.9%, p = 0.001) and mental symptoms (32.0% vs. 47.1%, p < 0.001) than the control group. Cognitive symptoms were comparable (22.5% vs. 17.2%, p = 0.12). However, compared to pre-ICU health symptoms and scores, COVID-19 survivors experienced an increase in symptom occurrence rates in all domains and a decrease in QoL, whereas the control group only experienced an increase in mental and cognitive symptoms, with a similar QoL at one-year follow-up. Conclusions COVID-19 ICU survivors experience equal or less health problems but a greater decline in QoL one year after ICU admission compared to non-COVID-19 ARDS or pneumonia survivors.

BackgroundHealth service utilisation changes across the life-course and may be influenced by contextual factors at different times. There is some evidence that men engage less with preventive health services, including attending doctors' clinics, however the extent to which this varies temporally and across different age groups is unclear. This study aimed to describe age or cohort effects on engagement with GPs among employed mothers and fathers in Australia, and differences in these trends between men and women.MethodsWe linked data from the 'Growing up in Australia: The Longitudinal Study of Australian Children' with administrative health service records from Medicare. We used a small-domain estimation Age-Period-Cohort method to describe patterns in health service use among working-age male and female parents in Australia while adjusting for employment status and controlling for time-invariant factors. Our small-domain method assumes a smooth response surface of Age, Period and Cohort.ResultsMale parents have lower health service engagement than women of the same age at the same time period. Men's pattern of health service use across time is likely explained entirely by ageing. That is, we find that patterns in health service utilisation among men are largely driven by age effects, with no evidence of periods or cohort effects in health service engagement for men between 2002 and 2016.ConclusionsDifferences in health service utilisation between male and female parents at all age-period-cohort combinations highlight a need for more research to examine the extent to which this level of health service use among Australian men meets men's health needs, as well as barriers and enablers of health service engagement for men. Absence of evidence for period effects suggests that there is little shift in gendered patterns of health service utilisation during the observed period.