Care Register Research Articles

Combined subcutaneous implantable cardioverter defibrillator and pacemaker devices in complex congenital heart disease: a single-center experienced based study.

Subcutaneous implantable cardioverter defibrillators (S-ICD) are widely accepted therapy in congenital heart disease (CHD) patients at risk of life-threatening ventricular arrhythmias or sudden cardiac death (SCD) when pacing is not required. Occasionally, pacemaker (PM)-dependent CHD patients will subsequently develop an indication for a cardioverter defibrillator. The use of S-ICD in complex CHD patients who have had already PM devices implanted implies some specific considerations, as the safety for these patients in unknown and recommendations among physicians may vary widely. We review the data and studied the indications for S-ICD in complex CHD with previous PM and discuss its usefulness in clinical practice. From a large cohort of 345 patients enrolled in the S-ICD Monaldi care registry, which encompass all the patients implanted in the Monaldi Hospital of Naples, we considered 11 consecutive complex CHD patients (10M/1F aged 40.4 ±18.4 years) who underwent S-ICD implant after a previous PM implant, from February 2015 to October 2022. Mean follow-up was 25.5 ± 22 months. All the patients showed a good compliance to the device system with no complications (infections or skin erosions). In complex CHD with already implanted PM devices, S-ICD implant appears to be a safe alternative to PM upgrading to transvenous ICD system, avoiding abandoned leads or life-threatening lead extraction. However, there are important issues with regard to testing and programming that need to be addressed at the time of implantation.

Parental education, ADHD in family and ADHD diagnosis incidence in Finnish children and adolescents

Abstract Background Lower parental education is linked to higher incidence of attention-deficit hyperactivity disorder (ADHD) diagnosis in offspring, as is having ADHD in family, but these associations are rarely studied together. We examined whether parental education predicts offspring ADHD diagnosis differently for children and adolescents with or without ADHD family members. Methods We used Finnish total population register-based data on individuals born between 1994-2003 with non-migrant background. We followed 228,247 boys and 217,866 girls for first ADHD diagnosis, measured from health care or medication registers, in childhood (4-12) and adolescence (13-17), and identified ADHD for biological parents or full siblings. We used Poisson regression to examine differences in diagnoses separately by offspring sex and age group. Results Preliminary results show that boys are more often diagnosed for ADHD in childhood and girls in adolescence, but incidence is higher for boys in both age groups. Among boys and girls without ADHD family members, lower parental education is associated with higher incidence in both childhood and adolescence. Among those with ADHD family members, lower parental education predicts higher incidence in childhood, but in adolescence the differences by parental education even out for boys, and for girls, higher parental education predicts higher incidence. Conclusions While lower parental education predicts higher ADHD diagnosis incidence in general, for adolescents in ADHD families, higher parental education seems to increase the likelihood of getting diagnosed -particularly for girls. This suggests that adolescents in ADHD families with lower parental education may remain without ADHD diagnosis if they are not diagnosed as children. Support measures should be developed to ensure equal access to diagnosis and care irrespective of age, gender and family background. Key messages • Lower parental education predicts higher ADHD diagnosis incidence in general. Yet, adolescents in ADHD families with lower educated parents may remain underdiagnosed. • Support measures should be developed to guarantee equal access to ADHD diagnosis and care regardless of family background.

Assessing mental health from registry data: what is the best proxy?

Abstract Background Medical registries frequently underestimate the prevalence of health problems compared with surveys. This study aimed to determine the registry variables that can serve as a proxy for variables studied in a mental health survey. Methods Prevalences of depressive symptoms and antidepressant use from the 2018 Belgian Health Interview Survey (HIS), stratified by sex and age, were compared with same-year prevalences from INTEGO, a Belgian primary care registry. Participants aged 15 and above were included. We assessed correlation and agreement using Spearman's rho (SR), the intraclass correlation coefficient (ICC) and the limits of agreement (LOAs). Results HIS questions about depressive symptoms were compared with the following variables from INTEGO: symptom codes (SR 0.763, ICC 0.026), diagnosis codes (SR 0.653, ICC 0.195), free text (SR 0.653, ICC 0.322), antidepressant prescriptions (SR 0.793, ICC 0.391) and the combinations symptom + diagnosis codes (SR 0.640, ICC 0.270) and symptom + diagnosis codes + free text (SR 0.653, ICC 0.386). LOAs varied from [-0.120, 0.021] for antidepressants to [-0.015, 0.061] for the full combination. HIS questions about antidepressant use were compared with prescription frequencies in INTEGO of at least once (SR 0.899, ICC 0.586) and at least three times yearly (SR 0.895, ICC 0.835). Corresponding LOAs were [-0.093, -0.008] and [-0.053, 0.007]. Conclusions Correlation between the HIS and INTEGO was high, agreement fair to poor. Agreement increased by combining certain variables, by including free text, or by increasing the prescription frequency to resemble chronic use. Prevalences from INTEGO were mostly underestimates. A considerate choice of variables and prescription chronicity is needed to accurately use a registry as a surveillance tool for mental health. Key messages • The external validity of medical registries can be poor, especially compared with survey data. • Researchers should be aware of the choice of variables when using registry data as a proxy for population measures.

When a home is no longer the best place – older adults’ use of health and care services in the context of a major healthcare reform

Abstract This study investigates the association between insufficient home care and the use of health and social care services among older adults. Data was collected from the Resident Assessment Instrument (RAI) home care register linked to registers for health care and primary health care (N = 33,493). The results show that one in six respondents felt that they would be better off living elsewhere than at home with home care, and these respondents used more hospital, emergency, and home care services than those who preferred living at home. The findings suggest that when older adults perceive their home care to be insufficient, they are more likely to utilize a range of health and social care services. Improved service integration could potentially mitigate the increased use of health and social care services by older adults who perceive their home care as inadequate. Furthermore, the ongoing healthcare reform in Finland aims to promote the integration of health and social services, which could lead to improved care outcomes for older adults. The study's findings can inform policymakers and healthcare providers on the importance of identifying and addressing the needs of older home care clients, particularly in the context of the ongoing healthcare reform in Finland.

Rapidly increasing multimorbidity results in increase of health care costs

Abstract Background Ageing of the population increases the prevalence and co-existence of many chronic diseases, i.e. multimorbidity. In Finland, information on the significance of multimorbidity and its relation to healthcare capacity is scarce. We aimed to study the prevalence of multimorbidity, the transitions between patient groups with and without multiple diseases and associated healthcare cost in 2017-2019. Methods The study cohort includes all adults (≥18 yrs) who used Finnish primary or specialized healthcare services in 2017. Multimorbidity status (non-multimorbid, multimorbid or multimorbid at risk) at baseline was determined based on the recordings of a diagnosis of interest using Finnish Care Register data from the year's 2015-2017. The costs were calculated using the care related patient grouping and national standard prices. Transition plots were drawn to observe the transition of patients and costs between different multimorbidity categories during two-year follow-up. Results Of 3,201,276 patients, 59% were non-multimorbid, 25% multimorbid and 16% multimorbid at risk in 2017. During the follow-up, we found a considerable number of patients moving from non-multimorbid group both to multimorbid and multimorbid at risk -groups. In 2019, 38% of patients were non-multimorbid, 31% were multimorbid, and 28% were multimorbid at risk of poor outcomes, and 3% had died. The proportion of multimorbid patients at risk increased the most in two years. The healthcare cost depended on the severity of multimorbidity. The total healthcare costs were the lowest among non-multimorbid patients and the highest among multimorbid patients at risk, costing 5660 million euros and accounting for 66,8% of total healthcare cost of this patient cohort in 2019. Discussion Multimorbidity, especially multimorbid patients at risk, is causing a heavy burden and costs for Finnish healthcare. The estimates on its effect on health care usage and costs should be used to guide healthcare planning. Key messages • The number of multimorbid patients, especially those at risk, is increasing fast. • Interventions for improving the prevention and care of multimorbidity are urgently needed.

11.F. Workshop: Health examination surveys to support decision making and for monitoring risk factors

Abstract Non-communicable diseases (NCDs) contribute for 74% of all deaths globally. They are also major cause of morbidity and disability. Many of the NCDs could be prevented with timely lifestyle changes and treatment of biological risk factors. Several NCDs, such as diabetes, cardiovascular diseases, chronic respiratory diseases and several cancers share same risk factors namely smoking, harmful alcohol use, unhealthy diet and lack of physical activity which impact on biological risk factors such as obesity, elevated blood pressure, elevated blood cholesterol and raised blood sugar levels. Up-to-date, representative, and high-quality health information is needed to support evidence-informed policy making and innovative research. Monitoring of lifestyles and biological risk factors affecting the NCDs is needed, to identify current the situation among different population groups and to plan and target required actions for prevention and treatment. Information on lifestyles is usually collected through survey questions about smoking habits, alcohol use, diet and physical activity. For biological risk factors, self-reported information tends to be biased. For example, elevated blood pressure, blood cholesterol and blood sugar levels are asymptomatic for a long time and people often don’t know about their condition. For obesity, stigma and societal pressure may lead to misreporting. For health care registers, information on biological risk factor is not systematically recorded and whenever data is available, it represents only patients. Therefore, for biological risk factors, the only reliable source for information about population level situation are health examination surveys (HES). At the European level, European Health Examination Survey (EHES) has provided a standardized protocols for measurement of key biological risk factors. These recommendations are in line with the WHO Stepwise approach for NCD risk factor surveillance. In the past ten years, less than half of the EU Member States have conducted at least one national HES. This workshop will include four presentations providing a general overview of why we need to be monitoring NCD risk factors and how broadly this is done in Europe. Three case examples showcase how the monitoring is conducted in different countries. Finland has done NCD risk factor monitoring regularly since 1960's and has the longest time series in Europe, Germany has conducted several comprehensive multi-year cross-sectional surveys since early 2000's and is piloting more flexible methods, and Portugal had their first health examination survey in 2015-2016 and is now planning the next one. How these countries have organized their monitoring and how the data obtained have been used to support actions targeting to improve population health will be discussed. Key messages • Health examination surveys are needed to obtain reliable and representative information about NCD risk factors at the population level. • Standardized protocols for measurements of biological risk factors are needed to ensure cross-country and over time comparison of the outcomes.

Simplified Selvester QRS Score as an Infarct Size Parameter in STEMI Patients Undergoing Pharmacoinvasive or Primary Percutaneous Coronary Intervention

Background:Cardiovascular disease especially acute myocardial infarct (AMI) is one of the highest cause of mortality worldwide. Majority of AMI comes in the form of ST elevation myocardial infarct (STEMI) that requires timely diagnosis and revascularization management to restore myocardial circulation. The simple method to estimate infarct size is by using simplified Selvester QRS Score to electrocardiogram records, which is a tested method that have good correlation with gold standard, namely cardiac magnetic resonance imaging. 
 Objectives : To investigate difference of infarct size with simplified Selvester QRS score parameter between STEMI patients undergoing pharmacoinvasive compared to primary PCI.
 Methods: Eighty-two STEMI patients, 41 of pharmacoinvasive and 41 of primary PCI was scored with simplified Selvester QRS score from electrocardiogram recording. Patient data are retroactively taken form Sardjito Cardiovascular Intensive Care (SCIENCE) registry. Scoring of simplified Selvester QRS Score was done by two experienced cardiologist blinded to patient procedure, and results then measured for interobserver agreement with Bland-Altman test. Comparison of QRS Score in pharmacoinvasive and primary PCI group was done with independent sample T test followed with multivariable linear regression test.
 Results: The means of simplified Selvester QRS score in pharmacoinvasive and primary PCI group is 7.240±3.015 and 8.900±4.188, p=0.043, respectively. Independent sample T test shows significant difference in the simplified Selvester QRS score in pharmacoinvasive and primary PCI group. The multivariable analysis shows that variables other than revascularization method independently influences QRS score are onset, anterior segment ST elevation and ST segment elevation in more > 3 leads in electrocardiogram.
 Conclusion: There is significant difference in infarct size measured by simplified Selvester QRS score betweem STEMI patient undergoing pharmacoinvasive method compared to primary PCI procedure, which is lower in the pharmacoinvasive group

Comorbidities in childhood atopic dermatitis: A population-based study.

Atopic dermatitis (AD) is a chronic inflammatory skin disease that is associated with allergic comorbidities. However, studies examining comorbidities in childhood AD are incomplete, which may contribute to suboptimal care. The objective was to compare the risk of developing different allergic and non-allergic comorbidities among children with AD to that of a matched non-AD reference cohort in Sweden. This was a nationwide population-based cohort study using longitudinal data from primary and specialist care registers. Patients with AD were identified by confirmed diagnosis in primary or specialist care. The non-AD reference cohort was randomly drawn from the general population and matched 1:1 with the AD patients. The risk of developing the following conditions was evaluated: hypersensitivity and allergic disorders, neurological disorders, psychiatric disorders, infections, immunological and inflammatory disorders, Type 1 diabetes (T1D), endocrine and metabolic disorders, skeletal disorders, ocular disorders and malignancies. This study included 165,145 patients with AD (mild-to-moderate [n = 126,681] and severe [n = 38,464]) and an equally sized reference cohort. Patients with AD displayed a higher risk of developing comorbid conditions for all investigated categories, except for T1D and skeletal disorders, compared with the reference cohort. The highest risk compared with the reference cohort was observed for hypersensitivity and allergic disorders (hazard ratio [HR]: 3.87), followed by malignancies (HR: 2.53) and immunological and inflammatory disorders (HR: 2.36). Patients with AD also had higher risk of developing multiple comorbidities (≥2). The risk of comorbidity onset increased alongside AD severity and patients with active AD were associated with increased risk of comorbidity onset compared with patients in remission. The clinical burden of AD is substantial for children with AD and patients are at an increased risk of developing several comorbid conditions extending beyond the atopic march. Our results also showed a positive association between worsening severity of AD and an increased risk of comorbidity onset.

External validation of SAPS II score reported to the Norwegian Intensive Care and Pandemic Registry (NIPaR)

Background: Simplified Acute Physiology Score II (SAPS II) is a mortality prediction model widely usedto compensate for differences between intensive care units (ICU) in benchmarking and research. Accuracyof SAPS II is sparsely documented. We investigate accuracy by comparing patient journal SAPS II valueswith registry SAPS II values in the Norwegian Intensive Care and Pandemic Registry (NIPaR).Method: NIPaR personnel collected data from the patient journal during visitations to ICUs in ten differenthospitals between 2017 and 2022 while blinded for registry SAPS II data. The patient journal SAPS II valueswere subsequently compared with the registry SAPS II values.Results: Difference of means for SAPS II score between patient journal and registry data was 5.2 points(95% CI 2.8–7.6; p < 0.001). SAPS II score depended significantly on ICU (p < 0.001) and data origin (p =0.006), whereas the interaction term for these two variables was not significant.Conclusion: We find low accuracy of SAPS II score in a registry setting.

Prostate volume analysis in image registration for prostate cancer care: a verification study

Combined magnetic resonance imaging (MRI) and positron emission tomography/computed tomography (PET/CT) may enhance diagnosis, aid surgical planning and intra-operative orientation for prostate biopsy and radical prostatectomy. Although PET-MRI may provide these benefits, PET-MRI machines are not widely available. Image fusion of Prostate specific membrane antigen PET/CT and MRI acquired separately may be a suitable clinical alternative. This study compares CT-MR registration algorithms for urological prostate cancer care. Paired whole-pelvis MR and CT scan data were used (n = 20). A manual prostate CTV contour was performed independently on each patients MR and CT image. A semi-automated rigid-, automated rigid- and automated non-rigid registration technique was applied to align the MR and CT data. Dice Similarity Index (DSI), 95% Hausdorff distance (95%HD) and average surface distance (ASD) measures were used to assess the closeness of the manual and registered contours. The automated non-rigid approach had a significantly improved performance compared to the automated rigid- and semi-automated rigid-registration, having better average scores and decreased spread for the DSI, 95%HD and ASD (all p < 0.001). Additionally, the automated rigid approach had similar significantly improved performance compared to the semi-automated rigid registration across all accuracy metrics observed (all p < 0.001). Overall, all registration techniques studied here demonstrated sufficient accuracy for exploring their clinical use. While the fully automated non-rigid registration algorithm in the present study provided the most accurate registration, the semi-automated rigid registration is a quick, feasible, and accessible method to perform image registration for prostate cancer care by urologists and radiation oncologists now.

OR35-06 Polycystic Ovary Syndrome Is Associated With an Increased Mortality Risk

Abstract Disclosure: M. Ollila: None. R.K. Arffman: None. L. Morin-Papunen: None. E. Korhonen: None. M. Gissler: None. T.T. Piltonen: None. Women with polycystic ovary syndrome (PCOS) are burdened with multimorbidity, but there is only limited knowledge on mortality. Here, we investigated in a register-based 1:3 matched case-control study, whether women with PCOS have increased all-cause, or cause-specific mortality compared to women without PCOS. Women with PCOS (i.e., cases) were identified from the Finnish Care Register for Health Care using the International Classification of Diseases, Revisions 8, 9, and 10 (ICD-8, ICD-9, and ICD-10, respectively) codes for PCOS (ICD-10: E28.2, ICD-9: 256.4, ICD-8: 256.9). Control women were matched according to the year of birth and residential area. The time and cause of death as well as the highest level of education were extracted from the register of Statistics Finland. The registers covered the years 1969-2019. Crude and education-adjusted Cox proportional hazard models were applied, and the results were reported as hazard ratio (HR) with 95% confidence intervals. The study included 9,839 women with PCOS and 70,705 controls. Overall, 1,003 controls and 177 women with PCOS died during the follow-up period. The women with PCOS died significantly younger than the controls (51.4 ± 16.4 versus 52.9 ± 16.6 years, p&amp;lt;0.001). In the unadjusted analysis, women with PCOS had increased overall mortality (HR=1.53 [1.28-1.84]) as well as increased mortality due to tumors (HR=1.42 [1.06-1.90]), endocrine, nutrition, or metabolic diseases (HR=2.45 [1.02-5.96]), and diseases of the circulatory system (HR=1.77 [1.19-2.62]). In the adjusted analysis, women with PCOS had increased overall mortality (HR=1.47 [1.23-1.76]), as well as increased mortality due to diseases of the circulatory system (HR=1.67 [1.13-2.48]) and tumors (HR=1.38 [1.04-1.85]). Regarding more specific causes of death, women with PCOS had increased mortality due to diabetes (HR=3.07 [1.16-8.08]), other diseases of the circulatory system (HR=2.07 [1.00-4.25]), and bronchitis (HR=3.61 [1.01-12.88]) in the adjusted analyses. In conclusion, PCOS is a severe lifelong syndrome that increases mortality. More emphasis should be targeted on the prevention and treatment of diabetes, circulatory diseases, tumors, and respiratory diseases in women with PCOS to reduce the mortality risk. Presentation Date: Sunday, June 18, 2023

Delay in hospital presentation is the main reason large vessel occlusion stroke patients do not receive intravenous thrombolysi.

Intravenous thrombolysis (IVT) and endovascular therapy (EVT) are the mainstays of treatment for large vessel occlusion stroke (LVOS). Prior studies have examined why patients have not received IVT, the most cited reasons being last-known-well (LKW) to hospital arrival of>4.5hours and minor/resolving stroke symptoms. Given that LVOS patients typically present moderate-to-severe neurologic deficits, these patients should be easier to identify and treat than patients with minor strokes. This investigation explores why IVT was not administered to a cohort of LVOS patients who underwent EVT. This is an analysis of the Optimizing the Use of Prehospital Stroke Systems of Care (OPUS-REACH) registry, which contains patients from 9 endovascular centers who underwent EVT between 2015 and 2020. The exposure of interest was the receipt of intravenous thrombolysis. Descriptive summary statistics are presented as means and SDs for continuous variables and as frequencies with percentages for categorical variables. Two-sample t tests were used to compare continuous variables and the chi-square test was used to compare categorical variables between those who received IVT and those who did not receive EVT. Two thousand forty-three patients were included and 60% did not receive IVT. The most common reason for withholding IVT was LKW to arrival of>4.5 (57.2%). The second most common contraindication was oral anticoagulation (15.5%). On multivariable analysis, 2 factors were associated with not receiving IVT: increasing age (odds ratio [OR] 0.86; 95% confidence interval [CI] 0.78-0.93) and increasing time from LKW-to hospital arrival (OR 0.45 95% CI 0.46-0.49). Like prior studies, the most frequent reason for exclusion from IVT was a LKW to hospital presentation of>4.5hours; the second reason was anticoagulation. Efforts must be made to increase awareness of the time-sensitive nature of IVT and evaluate the safety of IVT in patients on oral anticoagulants.

Oral Cavity Squamous Cell Carcinomas in Patients with a History of Oral Lichen Planus: Frequency and Outcomes

Oral lichen planus (OLP) is an inflammatory condition which affects the mucous membranes of the oral cavity. While previous studies have described the association between OLP and development of oral cavity cancer, there is currently a paucity of literature examining the impact of this disease on treatment response and prognosis. As such, we present a retrospective cohort study of Oral cavity squamous cell carcinoma (OCSCC) patients with a history of OLP to explore the course of their disease. Using an IRB approved tertiary care registry of head and neck cancer patients, we identified patients with OCSCC who had a prior diagnosis of OLP. The number of new primary tumors, rates of local (LF), regional (RF) and distant failure (DF), as well as overall survival (OS) were assessed using Cox proportional hazards and Kaplan Meier analysis for actuarial survival estimates. Fifty-four patients with OCSCC and OLP were identified with 109 individual OCSCC diagnoses. Patients had a median age of 67 years, were predominantly female (n = 42, 77.8%) and never smokers (n = 29, 53.7%) with a median follow up after diagnosis of OCSCC of 46.5 months. Nine patients (16.7%) had a history of immunosuppression of whom 6 (11.1%) had chronic steroid use for treatment of OLP. Within the cohort, 33 (61.1%) of OLP patients had a single OCSCC, 11 (20.4%) had 2, and 10 (18.5%) had >3 separate tumors develop. The most common oral cavity subsites were oral tongue (n = 42, 38.5%), followed by alveolar ridge (n = 14, 12.8%) and gingiva (n = 13, 11.9%). Papillary SCC subtype was identified in 10.1%. 92.7% of tumors (n = 101) were treated with primary surgery, with 23 (21.1%) receiving adjuvant RT and 10 of those patients receiving concurrent chemotherapy. Among resected patients, pathologic stages were predominantly T1-2 (84.1%) and N0 (50% vs N1 15.6% and N2a-3 34.4%). The mean RT dose was 62 Gy in 32 fractions. Locoregional failure occurred in 24.8% of cancers (n = 27), with local and regional failure occurring in 13.8% (n = 15) and 11% (n = 12) of lesions, respectively. Recurrence free survival at 3 and 5 years was 75% and 70.3%, respectively, with overall survival at 3 and 5 years of 71.1% and 67%, respectively. Patients with OCSCC and a history of OLP are predominantly female and never smokers. The tumors that develop in such patients are often early stage but a proportion of patients appear to be at higher risk of developing multiple malignancies and surveillance of this patient population to identify new tumors is crucial.

Risk of malignant disease in 1-year sepsis survivors, a registry-based nationwide follow-up study

BackgroundCancer and sepsis share risk factors, and sepsis patients may have impaired immune response and increased morbidity long after intensive care. This study aimed to assess whether sepsis survivors are at increased risk for cancer. Our objective was to assess the incidence of new cancer in 1-year sepsis survivors and test the hypothesis that it is higher than that of the general population.MethodsWe obtained data on ICU admissions of adult patients from Swedish Intensive care registry (SICR) from 2005 to 2017. We included patients with an explicit ICD-10 code for sepsis for the primary ICU admission. We obtained data on cancer diagnoses (2001–2018), death (2005–2018) and emigration (2005–2018) from Cancer and Cause of death and National Patient Registry databases of the National Board of Health and Welfare; age and sex-specific cancer incidence rates in Sweden from NORDCAN registry from 2006 to 2018. One-year survivors formed the final cohort, that was followed for new cancer diagnoses until death, emigration, or end of 2018, whichever came first. The main outcome measure was standardized incidence rate ratio (SIR) to compare the incidence of cancer in 1-year sepsis survivors to that in the general population (NORDCAN). We also performed several sensitivity analyses.ResultsIn a cohort of 18,550 1-year survivors, 75,427 person years accumulated during a median follow-up (FU) of 3.36 years (IQR 1.72–5.86), 6366 (34.3%) patients died, and 1625 (8.8%) patients were diagnosed with a new cancer after a median FU of 2.51 (IQR 1.09–4.48) years. The incidence ratio of any new cancer over the whole FU was 1.31 (95% CI 1.23–1.40) for men and 1.74 (95% CI 1.61–1.88) for women. The difference in incidence rates persisted in several sensitivity analyses. The SIRs were highest in cancers of gastrointestinal tract, genital organs, and skin.Conclusion and relevanceCompared to general population, incidence of cancer is increased in 1-year sepsis survivors. Variation in the findings depending on follow-up time suggests that factors other than sepsis alone are involved. Surveillance for malignant disease may be warranted in sepsis survivors.Graphical abstract

Prior physical illness predicts death better than acute physiological derangement on intensive care unit admission in COVID-19: A Swedish registry study.

COVID-19 is associated with prolonged intensive care unit (ICU) stay and considerable mortality. The onset of persistent critical illness, defined as when prior illness predicts death better than acute physiological derangement, has not been studied in COVID-19. This national cohort study based on the Swedish Intensive Care Registry (SIR) included all patients admitted to a Swedish ICU due to COVID-19 from 6 March 2020 to 9 November 2021. Simplified Acute Physiology Score-3 (SAPS3) Box 1 was used as a measure of prior illness and Box 3 as a measure of acute derangement to evaluate the onset and importance of persistent critical illness in COVID-19. To compare predictive capacity, the area under receiver operating characteristic (AUC) of SAPS3 and its constituent Box 1 and 3 was calculated for 30-day mortality. In 7 969 patients, of which 1 878 (23.6%) died within 30 days of ICU admission, the complete SAPS3 score had acceptable discrimination: AUC 0.75 (95% CI 0.74 to 0.76) but showed under prediction in low-risk patients and over prediction in high-risk patients. SAPS3 Box 1 showed markedly better discrimination than Box 3 (AUC 0.74 vs 0.65, P<0,0001). Using custom logistic models, the difference in predictive performance of prior and acute illness was validated, AUC 0.76 vs AUC 0.69, p<0.0001. Prior physical illness predicts death in COVID-19 better than acute physiological derangement during ICU stay, and the whole SAPS3 score is not significantly better than just prior illness. The results suggests that COVID-19 may exhibit similarities to persistent critical illness immediately from ICU admission, potentially because of long median ICU length-of-stay. Alternatively, the variables in the acute physiological derangement model may not adequately capture the severity of illness in COVID-19.

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study.

Palliative care improves quality of life for people with life-threatening illnesses. There are longstanding inequalities in access to palliative care, with many people never identified as having palliative care needs, particularly frail older people, those with non-malignant disease, and people from ethnic minority backgrounds. Little is known about the process of identification of palliative care needs from a patient perspective. To provide new understanding into patient views and experiences of the process of identification of palliative care needs, and to explore the impact of identification on health care, if any, from a patient perspective. A qualitative interview study undertaken with patients and family carers in a major UK city. Semi-structured interviews were carried out with patients (and/or family carers) identified as being on general practice palliative care registers. An inductive thematic analysis was conducted to explore the data. Eleven participants were recruited: eight patients and three family carers. The following three interrelated themes were identified: 1) misconceptions about palliative care and unshared prognostic uncertainty hinder the identification of palliative care needs; 2) a compassionate, timely approach is required for identification of palliative care needs, with or without an identification tool; and 3) identification of palliative care needs is beneficial where it leads to proactive holistic care. A compassionate approach, sharing of prognostic uncertainty, and proactive primary care are key to timely, beneficial identification of palliative care needs. Future policy should ensure that identification is an adaptable, personalised process to meet the individual needs of people with advanced serious illnesses.

Lessons learned from the development of a national registry on dementia care and support based on linked national health and administrative data.

This paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support. This paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability). The linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources. A key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data.

Support given by health professionals before and after a patient's death to relatives involved in general palliative care at home in Sweden: Findings from the Swedish Register of Palliative Care.

General palliative care (PC) is provided more at home, leading to increased involvement of relatives. Although support for relatives is a fundamental component of PC, there are deficiencies in the support provided to relatives when general PC is provided at home. This study aimed to describe the support provided by health professionals before and after a patient's death to relatives involved in general PC at home. A cross-sectional register study was implemented, with data from the Swedish Register of Palliative care. The sample consisted of 160 completed surveys from relatives who had been involved in general PC at home, with 160 related surveys answered by health professionals. Only the questions about support to relatives were used from the surveys. The findings showed that although many relatives appear to receive support in general PC at home, not all relatives receive optimal support before or after a patient's death. The findings also indicated differences in whether relatives received some support before and after a patient's death depending on the type of relative. There were also differences in responses between health professionals and relatives regarding if relatives received counseling from a doctor about whether the patient was dying. There is potential for improvements regarding support for relatives, especially after a patient's death, which has been confirmed in previous studies. The differences in whether relatives received support before and after a patient's death depending on the type of relative highlight the need for future research on how to support different types of relatives before and after a patient's death when general PC is provided at home.

Stroke epidemiology and outcomes of stroke patients in Nepal: a systematic review and meta-analysis

BackgroundWith an increasing burden of stroke, it is essential to minimize the incidence of stroke and improve stroke care by emphasizing areas that bring out the maximum impact. The care situation remains unclear in the absence of a national stroke care registry and a lack of structured hospital-based data monitoring. We conducted this systematic review and meta-analysis to assess the status of stroke care in Nepal and identify areas that need dedicated improvement in stroke care.MethodsA systematic literature review was conducted to identify all studies on stroke epidemiology or stroke care published between 2000 and 2020 in Nepal. Data analysis was done with Statistical Package for Social Sciences (SPSS) and Comprehensive Meta-analysis (CMA-3).ResultsWe identified 2533 studies after database searching, and 55 were included in quantitative and narrative synthesis. All analyses were done in tertiary care settings in densely populated central parts of Nepal. Ischemic stroke was more frequent (70.87%) than hemorrhagic (26.79%), and the mean age of stroke patients was 62,9 years. Mortality occurred in 16.9% (13-21.7%), thrombolysis was performed in 2.39% of patients, and no studies described thrombectomy or stroke unit care.ConclusionThe provision of stroke care in Nepal needs to catch up to international standards, and our systematic review demonstrated the need to improve access to quality stroke care. Dedicated studies on establishing stroke care units, prevention, rehabilitation, and studies on lower levels of care or remote regions are required.

Childhood contact with social services and self-harm and suicidal ideation in young adulthood: A population-wide cohort study in Northern Ireland

ObjectivesChildhood contact with social services is associated with adult suicide risk, but little is known about self-harm and suicidal ideation, which are recognised predictors of suicide. This study compares self-harm (SH) and suicidal ideation (SI) in young adults with childhood history of social services contact to unexposed peers.&#x0D; MethodA longitudinal, population-wide study of all children born 1985-1993 in Northern Ireland (NI) linking primary care registrations to social services data (1985-2015) and a national registry capturing all SH and SI presentations to the 12 Emergency Departments in NI (2012-2015). Multilevel logistic regression models estimated the association between level of contact with social services in childhood (no contact; referred but assessed as not in need (NIN); child in need (CIN); and child in care (CIC)) and SH, SI and any SH/SI, accounting for confounders and the amount of variation attributable to clustering by Health and Social Care Trust.&#x0D; ResultsThe cohort comprised 253,495 individuals (ages 18-30 years) alive and registered with a general practitioner during follow-up. Of the cohort, 4,026 presented with SH and 1,669 with SI. Individuals with a childhood history of social services contact comprised 10.8% of the cohort (2.9% NIN; 6.5% CIN; and 1.4% CIC) yet accounted for 40.9% of SH/SI cases. Likelihood of SH, SI, and any SH/SI increased stepwise with level of contact with social services. After full adjustment, young adults deemed NIN in childhood were three times more likely to present with SH/SI (OR 3.45 [95% CI 3.07-3.88]), former CIN five times more likely (OR 5.33 [95% CI 4.97-5.74]), and former CIC ten times more likely (OR 10.49 [95% CI 9.45-11.66]), relative to those with no contact.&#x0D; ConclusionAdults with a childhood history of social services contact, including those assessed as not in need, account for a disproportionate number of self-harm and suicidal ideation cases. Timely and targeted interventions aimed at this population have the potential to reduce the burden of self-harm and suicide