Patient Registry Research Articles

Association between infertility and cervical insufficiency in nulliparous women- the contribution of fertility treatment

Pregnancies conceived through assisted reproduction have been associated with increased risks of adverse pregnancy and delivery outcomes, including cervical insufficiency (CI). Despite CI being a significant cause of late miscarriage or preterm birth, there are minimal published data on the associations of infertility (with or without fertility treatment) with CI. This study uses Swedish national health registers to examine the associations between infertility, assisted reproduction and CI in nulliparous women. This population-based case-control study is based on data from Swedish national health registers. Using the information on parity and multiple gestation in the Medical Birth Register, singleton pregnancies of nulliparous women were extracted and linked to the National Patient Register and the National Quality Register for Assisted Reproduction. Using diagnostic codes for CI and procedural codes for cervical cerclage, a total of 2662 CI cases were identified for deliveries in the 21-year period, 1992-2012. A reference group of 26,620 controls were extracted from the population of non-cases using simple random sampling.. Infertility was classified using a woman's report of difficulty conceiving for at least one year. Fertility treatment was assessed through self-reported variables in the Medical Birth Register and fertility treatment registration in the National Quality Register for Assisted Reproduction. On adjusting for maternal characteristics and medical history, infertility was associated with CI, overall (adjusted odds ratio (aOR) ) 1.91 (1.53, 2.39) and in the subgroup of non-users of fertility treatment (aOR) 1.60 (1.21, 2.12), compared to women without infertility. Among women with infertility, pregnancies conceived with the aid of fertility treatment had higher risk of CI than naturally-conceived pregnancies (aOR 1.49 (1.05, 2.10). In the subgroup of women with infertility and no history of miscarriage, the use of fertility treatment was associated with CI (aOR 3.48 (2.02. 5.98)). No association was found between fertility treatment and CI in the pregnancies of women with infertility and a history of miscarriage. From this study, we conclude that CI in nulliparous women is associated with both infertility and its treatment. For infertile women, the risk of CI following fertility treatment was seen only in those with no history of miscarriage, providing crucial information for improving risk assessment and management strategies for preterm birth prevention in populations availing of fertility treatment.

Preoperative Psychopharmacological Treatment is Not a Risk factor for Poorer Patient-Reported Improvements 12 months After Hip or Knee Arthroplasty: A Multicenter Registry-Based Cohort study of 7,247 Procedures

BackgroundPreoperative psychopharmacological treatment (PPT) has been associated with increased hospital length of stay and readmission rate after hip and knee arthroplasty. However, little is known regarding the association between PPT and improvements in patient-reported outcomes postoperatively in a multicenter fast-track setting. Thus, the primary objective was to investigate whether PPT is a risk factor for poorer patient-reported improvements 12 months after surgery. Secondary objectives included assessment of additional time points and subgroups of PPT. MethodsThis multicenter registry-based cohort study included 4,021 primary hip and 3,226 primary knee arthroplasties performed from 2016 to 2020 at three fast-tack departments in Denmark due to primary osteoarthritis. The Oxford Hip/Knee Score (OHS/OKS), EQ-5D-3/5L, and EQ visual analog scale (VAS) were collected at baseline and three, six, 12, and 24 months after surgery. Exposure status was assigned using the Danish National Prescription Registry. Marginal mean differences (MD) with 95% confidence intervals (CI) were estimated using multilevel Tobit regression and adjusted for age, sex, and the Charlson Comorbidity Index obtained from the Danish National Patient Register. ResultsNo associations were found between PPT and improvements in OHS (MD -0.5, CI -1.4 to 0.4) or OKS (MD -0.3, CI -1.2 to 0.5) after 12 months. However, PPT was associated with lower baseline OHS (MD -1.4, CI -2.2 to -0.6) and OKS (MD -2.1, CI -2.9 to -1.3), and 12 month follow-up OHS (MD -1.9, CI -2.8 to -1.1) and OKS (MD -2.4, CI -3.2 to -1.6). Similar findings were observed at other time points, using EQ-5D-3/5L or EQ VAS, and when evaluating PPT subgroups. ConclusionIn hip and knee arthroplasty, PPT was not a risk factor for poorer patient-reported improvements 12 months after surgery. However, PPT was associated with marginally poorer baseline and follow-up scores. Thus, arthroplasties remain effective treatments despite PPT from a patient-centered perspective.

Incident Benzodiazepine and Z-Drug Use and Subsequent Risk of Serious Infections.

Animal studies have suggested a link between benzodiazepine and related Z-drug (BZDR) use and immune dysfunction. Corresponding evidence in humans is limited and focuses mainly on pneumonia. This study aimed to assess the association of incident BZDR use with subsequent development of serious infections. This Swedish register-based study included a population-based demographically matched cohort, a co-twin control cohort, and an active comparator cohort. Out of 7,362,979 individuals aged below 65 years who were BZDR naïve by 2007, 713,896 BZDR recipients with incident dispensation of any BZDRs between 2007 and 2019 were 1:1 matched to 713,896 nonrecipients from the general population; 9197 BZDR recipients were compared with their 9298 unexposed co-twins/co-multiples; and 434,900 BZDR recipients were compared with 428,074 incident selective serotonin reuptake inhibitor (SSRI) recipients. The outcomes were identified by the first inpatient or specialist outpatient diagnosis of serious infections in the National Patient Register, or death from any infections recorded as the underlying cause in the Cause of Death Register. Cox proportional hazards regression models were fitted and controlled for multiple confounders, including familial confounding and confounding by indication. To study a possible dose-response association, the cumulative dosage of BZDRs dispensed during the follow-up was estimated for each BZDR recipient and modeled as a time-varying exposure with dose categories in tertiles [≤ 20 defined daily doses (DDDs), > 20 DDDs ≤ 65, and > 65 DDDs). The risk of infections was assessed in BZDR recipients within each category of the cumulative BZDR dosage compared to their demographically matched nonrecipients. In the demographically matched cohort (average age at incident BZDR use 42.8 years, 56.9% female), the crude incidence rate of any serious infections in BZDR recipients and matched nonrecipients during 1-year follow-up was 4.18 [95% confidence intervals (CI) 4.13-4.23] and 1.86 (95% CI 1.83-1.89) per 100 person-years, respectively. After controlling for demographic, socioeconomic, clinical, and pharmacological confounders, BZDR use was associated with 83% relative increase in risk of any infections [hazard ratio (HR) 1.83, 95% CI 1.79-1.89]. The risk remained increased, although attenuated, in the co-twin cohort (HR 1.55, 95% CI 1.23-1.97) and active comparator cohort (HR 1.33, 95% CI 1.30-1.35). The observed risks were similar across different types of initial BZDRs and across individual BZDRs, and the risks increased with age at BZDR initiation. We also observed a dose-response association between cumulative BZDR dosage and risk of serious infections. BZDR initiation was associated with increased risks of serious infections,even when considering unmeasured familial confounding and confounding by indication. The exact pathways through which BZDRs may affect immune function, however, remain unclear. Further studies are needed to explore the neurobiological mechanisms underlying the association between BZDR use and serious infections, as it can lead to safer therapeutic strategies for patients requiring BZDR.

Primary and incisional hernias should be considered separately in clinical decisions and research: A nationwide register-based cohort study

BackgroundVentral hernias of umbilical, epigastric, and incisional types pose varied surgical challenges. Recent debates and research suggest that treatment strategies and outcomes may vary significantly based on hernia type and width. This study investigated whether differences in the risk of surgical outcomes among primary and incisional hernias are solely due to the hernia type. The primary outcome was reoperation for recurrence, and the secondary outcome was 90-day postoperative readmission. MethodsThis study was based on prospectively collected data from the Danish Ventral Hernia Database linked with the Danish Civil Registration system and the National Patient Register. Data spanned from 2007 to 2022 and included patients with umbilical, epigastric, or incisional hernias. The 3 hernia types were analyzed for the risk of reoperation for recurrence, adjusted for sex, age, emergency repair, width, use of mesh, and Charlson comorbidity index. ResultsWe included 57,312 hernias: 34,147 umbilical, 9,433 epigastric, and 13,722 incisional hernias. Compared with patients with umbilical hernias, patients with epigastric hernias had a lower risk of reoperation (hazard ratio: 0.88, 95% confidence interval: 0.79–0.99) and those with incisional hernias had an increased risk (hazard ratio: 2.93, 95% confidence interval: 2.57–3.33). Postoperative 90-day readmission rates were also higher for patients with incisional hernias than for patients with umbilical and epigastric hernias. ConclusionIncisional hernias exhibited a higher risk of reoperation for recurrence and 90-day postoperative readmission, underscoring their unique nature in terms of both origin and clinical behavior. The findings suggest that primary and incisional hernias should be separate entities in medical practice and research.

Incidence of Graves' Disease with Validation and Completeness of the Diagnosis for Registry Extracts in the Danish National Patient Register.

Graves' disease (GD) is one of the most common causes of thyrotoxicosis. It has been proposed to identify incident GD by using the GD-specific code, E05.0, of the 10th revision of the International Classification of Disease (ICD-10) in the Danish National Patient Register (DNPR). We aimed to report the incidence of GD and to investigate the validity and completeness of E05.0 registration using Aalborg University Hospital (AaUH) as a single centre-sample. The study included registry data from 2020 to 2022. The study population (n=2,893) comprised all people (15-99 years) in the catchment area of AaUH (n=244,872) with either positive anti-thyroid stimulating hormone receptor antibodies (TRAb), or registered with a thyroid disease related ICD-10 code E03.0-E07.9, O99.2 or O90.5 at the Department of Endocrinology, AaUH. To identify incident cases, all subjects occurring for the first time in 2020 were excluded (n=2,339). The incident subjects were categorized into a general practice (n=63) or hospital care group (n=491) and underwent GD verification by biochemical tests and thyroid imaging. Validity was evaluated by positive (PPV) and negative (NPV) predictive values and completeness of E05.0 registration was estimated to the total number of verified GD subjects in hospital care only and in overall (groups combined). One hundred thirty-one incident GD subjects were identified corresponding to an incidence of 26.8 per 100,000/year. E05.0had a PPV of 90% [95% CI: 81;96] and a NPV of 90% [95% CI: 85;93] to identify incident cases of GD. Completeness was estimated to be 73% [95% CI: 63;82] in hospital care and 50-60% [95% CI: 41;68] in overall. We report on a similar incidence of GD as previous studies in Denmark. Despite a high PPV, incident cases of GD could not adequately be identified by E05.0 in DNPR due to low completeness. Researchers should rely on biochemical test results to identify incident GD.

Timely Follow-Up After a First Diagnosis of Cirrhosis is Associated With Reduced Mortality but No Impact on Rehospitalisations: A Population-Based Cohort of 8852 Patients.

Timely transition of care amongst patients with a first diagnosis of cirrhosis in a hospital to an outpatient visit is important. We evaluated rates of outpatient follow-up after a first diagnosis of cirrhosis during an inpatient setting, and its association with subsequent rates of rehospitalisation and mortality. We conducted a population-based cohort study identifying all hospitalised patients in Sweden diagnosed with cirrhosis between 2002 and 2020 from the Swedish National Patient Register. The primary outcome was any outpatient visit related to cirrhosis within 90 days after hospital discharge. Secondary outcomes were rates of rehospitalisation and mortality within 1 year of discharge in patients receiving outpatient follow-up within 90 days or not. Cox regression was used for all analyses, and incidence rates per 1000 person-years were calculated for mortality and rehospitalisation. Of 8852 patients, 3759 (42%) had outpatient follow-up within 90 days of discharge. Patients who received follow-up within 90 days of discharge were younger, had a higher level of education and were more likely to have liver decompensation or hepatocellular carcinoma compared to those without timely follow-up. We found that follow-up within 90 days was associated with lower rates of all-cause mortality within 1 year (aHR = 0.86, 95%CI = 0.78-0.96) but with no significant impact on rehospitalisations (aHR = 0.97, 95%CI = 0.91-1.03). In Sweden, 42% of hospitalised patients with newly diagnosed cirrhosis receive outpatient follow-up within 90 days of their hospital discharge. These patients may experience lower mortality but no change in rehospitalisations within 1 year.

A contemporary evaluation of the frequency & factors associated with overt stroke across the lifespan: A Ghanaian sickle cell disease registry analysis

BackgroundStroke is a devastating complication of Sickle Cell Disease (SCD) with significant mortality and substantial morbidity. The burden of prevalent stroke in SCD is highest in sub-Saharan Africa and estimated at 4.2 % to 6.4 % in the era where evidence-based prevention strategies such as use of hydroxyurea therapy and transcranial doppler ultrasound were not routine care. PurposeTo assess the contemporary frequency and factors associated with prevalent stroke across the lifespan in an SCD registry at the tertiary medical center in Ghana. MethodsThis is a cross-sectional study conducted at the Komfo Anokye Teaching Hospital, a tertiary medical center in the middle belt of Ghana. The center has comprehensive Sickle Cell Clinics for children, adolescents, and adults with a patient registry established as part of the Sickle Pan-African Research Consortium (SPARCo)-Ghana study from 2017 to date. Data captured in the registry and analyzed for the present study include demographics, stroke status using the WHO criteria supplemented by the Questionnaire for Verifying Stroke Free Status (QVSFS), use of hydroxyurea, and complete blood count. Logistic regression modeling was utilized to assess factors associated with stroke. ResultsAmong a registry cohort of 4115 individuals with confirmed SCD, 35 (0.85 %, 95 % CI: 0.59–1.18 %) had overt or clinically confirmed stroke. The frequency of stroke differed significantly across the lifespan being 0.38 % (95 % CI: 0.12–0.64 %) among children <10 years, 1.23 % (95 % CI: 0.73–1.94 %) among adolescents aged 10 to 17 years, and 1.44 % (95 % CI: 0.66–2.71 %) among adults 18 years or more, p = 0.007. In adjusted analysis, each 10-year increase in age was associated with odds ratio, OR (95 % CI) of 1.90 (1.42–2.54) and hydroxyurea use, OR of 6.09 (2.65–13.99). The association between hydroxyurea and stroke observed in this cross-sectional study is not causal. ConclusionApproximately 1 in 120 SCD patients in this large Ghanaian cohort had clinically overt stroke. The gradual uptake of hydroxyurea therapy into routine care for SCD in this resource-limited setting, may partly explain the lower frequency of stroke.

Prevalence of restless legs and association with patient-reported outcome measures in myasthenia gravis.

Inflammatory and immune mechanisms are considered in restless legs syndrome (RLS) pathophysiology with several autoimmune diseases associated with RLS. There is a paucity of studies examining RLS prevalence in myasthenia gravis (MG), an autoimmune neuromuscular disease. This study investigated RLS prevalence and association with patient-reported measures in a large registry of participants with MG using a validated RLS diagnostic questionnaire. The Myasthenia Gravis Foundation of America MG Patient Registry is used on a semi-annual basis to survey participants with MG. Patients aged ≥18 years, living in the United States, and answering "Yes" to physician diagnosed MG were invited by email to enroll in an RLS-customized web-based survey. Collection of data included demographics, disease variables, patient-reported measures with a simple depression scale, MG 15-item Quality of Life (MG-QOL15r), MG-Activities of Daily Living (MG-ADL) instruments, and 13-item short-form Cambridge-Hopkins diagnostic questionnaire for RLS (CH-RLSq13). Multivariable logistic regression models explored the association between RLS and MG variables of interest. 630 eligible participants with MG (age: 62.8±13.2; 54.9% female; 91.6% White) completed the survey. The overall prevalence of RLS was 14.8%. The prevalence of clinically significant RLS was 8.4%. The odds of having RLS were increased with higher (worse) MG-ADL, MG-QOL15r, and depression scores. History of "Thymic tumor with thymectomy" and "CPAP therapy" were also independent predictors of RLS. RLS is common in patients with MG and is associated with worse functional status, quality of life, and depression. The thymus could play a key role in an autoimmune process associating MG with RLS.

Strategies to improve the implementation of preventive care in primary care: a systematic review and meta-analysis

BackgroundAction on smoking, obesity, excess alcohol, and physical inactivity in primary care is effective and cost-effective, but implementation is low. The aim was to examine the effectiveness of strategies to increase the implementation of preventive healthcare in primary care.MethodsCINAHL, CENTRAL, The Cochrane Database of Systematic Reviews, Dissertations & Theses – Global, Embase, Europe PMC, MEDLINE and PsycINFO were searched from inception through 5 October 2023 with no date of publication or language limits. Randomised trials, non-randomised trials, controlled before-after studies and interrupted time series studies comparing implementation strategies (team changes; changes to the electronic patient registry; facilitated relay of information; continuous quality improvement; clinician education; clinical reminders; financial incentives or multicomponent interventions) to usual care were included. Two reviewers screened studies, extracted data, and assessed bias with an adapted Cochrane risk of bias tool for Effective Practice and Organisation of Care reviews. Meta-analysis was conducted with random-effects models. Narrative synthesis was conducted where meta-analysis was not possible. Outcome measures included process and behavioural outcomes at the closest point to 12 months for each implementation strategy.ResultsEighty-five studies were included comprising of 4,210,946 participants from 3713 clusters in 71 cluster trials, 6748 participants in 5 randomised trials, 5,966,552 participants in 8 interrupted time series, and 176,061 participants in 1 controlled before after study. There was evidence that clinical reminders (OR 3.46; 95% CI 1.72–6.96; I2 = 89.4%), clinician education (OR 1.89; 95% CI 1.46–2.46; I2 = 80.6%), facilitated relay of information (OR 1.95, 95% CI 1.10–3.46, I2 = 88.2%), and multicomponent interventions (OR 3.10; 95% CI 1.60–5.99, I2 = 96.1%) increased processes of care. Multicomponent intervention results were robust to sensitivity analysis. There was no evidence that other implementation strategies affected processes of care or that any of the implementation strategies improved behavioural outcomes. No studies reported on interventions specifically designed for remote consultations. Limitations included high statistical heterogeneity and many studies did not account for clustering.ConclusionsMulticomponent interventions may be the most effective implementation strategy. There was no evidence that implementation interventions improved behavioural outcomes.Trial registrationPROSPERO CRD42022350912.

Comparison of Reporting Quality in National Cystic Fibrosis Patient Registries: Implications for Identifying Use of Novel CFTR Modulators.

Advances in development of cystic fibrosis transmembrane conductance regulator modulator (CFTRm) therapies mean that now people who are heterozygous (instead of having to be homozygous) for the common F508del variant can benefit from these therapies. Recent economic estimates suggest only approximately 15% of the global population have CFTRm access, yet it is unknown how prevalence of F508del and economic factors may affect this availability. Data related to prevalence of cystic fibrosis (CF), CFTRm usage, and prevalence of F508del in 10 countries were extracted from publicly accessible registry reports from 2021. National gross domestic product (GDP) was obtained via open access World Bank data. Descriptive statistics and correlation coefficients assessed relationships. Notable discrepancies were noted in the equity of availability of data between national registries-only four countries reported number of patients eligible for CFTRm. Registry data represented 70,694 patients, with 42,858 found to be using CFTRm (60.6%). Prevalence of CFTRm usage ranged from 1.8% to 76.7% and prevalence of F508del ranged from 35.2% to 94.4%. The correlation between prevalence of CFTRm usage and F508del is positive (r = 0.56, p = 0.10), and the correlation between CFTRm usage and GDP (per capita) was also positive, and significant (r = 0.72, p = 0.02). Both F508del prevalence and GDP are associated with variable CFTRm usage rates, although a predominant reason is unclear as a result of poor consistency in registry reporting. Urgent action is needed to create uniform reporting of registry data and increase availability of novel CFTRm therapies to the global CF population.

Secular and modulator-specific drifts in the predictive performance of a rapid lung function decline algorithm: a cystic fibrosis patient registry study

PurposePredicting the onset of pulmonary exacerbation for people with cystic fibrosis (CF) is critical to identify those at high risk in advance and allows timely clinical intervention. The FEV1-indicated exacerbation signal (FIES) has been proposed by the CF Learning Network to identify pulmonary exacerbation events, but temporal predictive performance of this marker is unknown.MethodsTo assess the epidemiologic impact of secular trends in CF care and treatments on algorithms aimed at prediction of pulmonary exacerbation, we evaluated prediction model “drift” using a longitudinal retrospective cohort of 29,476 individuals from the U.S. CF Foundation Patient Registry (2011–2018). The FIES marker was defined for each clinical encounter using relative drops in lung function, measured as forced expiratory volume in 1 s of % predicted (FEV1pp). We formed predictive probabilities for each FIES event via a target function for a predictive algorithm of FEV1pp. Models were trained using 2 year data windows with prediction performance tested on subsequent years.ResultsYear-over-year FIES event discrimination remained consistent (area under the receiver-operator characteristic curve, AUC > 80%). Annual drift was < 1% with actual drop in AUC ~ 3% in 6 years. The model performed best in individuals with moderate-to-low baseline FEV1pp (AUC range: 84–85%). For relatively higher FEV1pp levels, discrimination was slightly lower with higher AUC variability.ConclusionWhile model fit improved by accounting for modulator therapy, prediction performance was similar. Most impactful model drifts occurred after 2012 coinciding with increased ivacaftor modulator use. Additional evaluation will be necessary given recent, broad uptake of highly effective modulators.

Framework for Multistakeholder Patient Registries in the Field of Rare Diseases: Focus on Neurogenetic Diseases.

Progress in genetic diagnosis and orphan drug legislation has opened doors to new therapies in rare neurogenetic diseases (RNDs). Innovative therapies such as gene therapy can improve patients' quality of life but come with academic, regulatory, and financial challenges. Registries can play a pivotal role in generating evidence to tackle these, but their development requires multidisciplinary knowledge and expertise. This study aims to develop a practical framework for creating and implementing patient registries addressing common challenges and maximizing their impact on care, research, drug development, and regulatory decision making with a focus on RNDs. A comprehensive 3-step literature and qualitative research approach was used to develop the framework. A qualitative systematic literature review was conducted, extracting guidance and practices leading to the draft framework. Subsequently, we interviewed representatives of 5 established international RND registries to add learnings from hands-on experiences to the framework. Expert input on the draft framework was sought in digital multistakeholder focus groups to refine the framework. The literature search; interviews with 5 registries; and focus groups with patient representatives (n = 4), clinicians (n = 6), regulators, health technology assessment (HTA) bodies and payers (n = 7), industry representatives (n = 7), and data/information technology (IT) specialists (n = 5) informed development of the framework. It covers the interests of different stakeholders, purposes for data utilization, data aspects, IT infrastructure, governance, and financing of rare disease registries. Key principles include that data should be rapidly accessible, independent, and trustworthy. Governance should involve multiple stakeholders. In addition, data should be highly descriptive, machine-readable, and accessible through a shared infrastructure and not spread over multiple isolated repositories. Sustainable and independent financing of registries is deemed important but remains challenging because of a lack of widely supported funding models. The proposed framework will guide stakeholders in establishing or improving rare disease registries that fulfill requirements of academics and patients as well as regulators, HTA bodies, and commercial parties. There is a need for more clarity regarding quality requirements for registries in regulatory and HTA context. In addition, independent financing models for registries should be developed, as well as well-defined policies on technical uniformity in health data.

Sex-specific differences in alive hospital discharge following infrarenal abdominal aortic aneurysm repair.

A longer time to alive hospital discharge following infrarenal abdominal aortic aneurysm (AAA) repair is associated with reduced patient-satisfaction and increased length of stay, hospital-acquired deconditioning, infection and costs. This study investigated sex-specific differences in, and drivers of, the rate of alive hospital discharge. Examination of UK National Vascular Registry (UK NVR), 2014-2019 and Swedish National Patient Registry (SE NPR) elective AAA patients, 2010-2018, for endovascular (EVAR) or open (OAR) aneurysm repair. Cox models assessed sex-specific difference in rate of alive hospital discharge, adjusting for co-morbidity, anatomy, standard-of-care, post-operative complications, and year, with in-hospital death as the competing risk. 29,751 AAA repairs (UK NVR -EVAR 12518:1532; OAR 6803:837; SE NPR - EVAR 4234:792; OAR 2638:497, men:women) were assessed. For EVAR, the unadjusted rate of alive hospital discharge was ∼25% lower for women (UK NVR HR 0.75 [0.71-0.80], p<.001; SE NPR HR 0.75 [0.69-0.81], p<.001). Following adjustment the sex-specific hazard ratio narrowed but remained significant (UK NVR: HR 0.83 [0.79-0.88], p<.001; SE NPR HR 0.83 [0.76-0.89], p<.001). For OAR, the rate of alive hospital discharge was 23-27% lower for women (UK NVR HR 0.73 [0.67-0.78], p<.001; SE NPR HR 0.77 [0.70-0.85], p<.001). Following adjustment the sex-specific hazard ratio narrowed (UK NVR HR 0.82 [0.76-0.88], p<.001; SE NPR HR 0.79 [0.72-0.88], p<.001) but remained significant. Women have a 25% lower rate of alive discharge after aortic surgery, despite adjustment for pre/peri- and postoperative parameters. Efforts to increase rate of alive hospital discharge for women should be sought.

Initiation of Intermittently Scanned Continuous Glucose Monitoring Is Associated With Reduced Hospitalization for Acute Diabetes Events and Cardiovascular Complications in Adults With Type 1 Diabetes.

We assessed the impact of intermittently scanned continuous glucose monitoring (isCGM) compared with blood glucose monitoring (BGM) on rates of hospitalization for metabolic and vascular complications of diabetes and on HbA1c levels for adults with type 1 diabetes. This retrospective study using data from the Swedish National Diabetes Register and the Swedish National Patient Register comprised adults with type 1 diabetes and an isCGM initiation date after 1 June 2017 and matched control individuals using BGM. Hospital admission rates were calculated per 100 person-years of follow-up. We identified 11,822 adults with type 1 diabetes and an isCGM index date after 1 June 2017 and HbA1c baseline values 3-8 months prior to the index date. Compared with 3,007 BGM users, isCGM users had a significantly lower relative risk of hospitalization for hypoglycemia (0.32; 95% CI 0.14, 0.74), diabetic ketoacidosis (0.55; 0.35, 0.87), stroke (0.48; 0.37, 0.64), acute myocardial infarction (0.64; 0.46, 0.91), atrial fibrillation (0.59; 0.38, 0.94), heart failure (0.25; 0.16, 0.39), peripheral vascular disease (0.21; 0.07, 0.62), kidney disease (0.48; 0.35, 0.66), or hospitalization for any reason (0.32; 0.29, 0.35). Compared with BGM users, change in mean HbA1c for isCGM users was -0.30% (-3.3 mmol/mol) at 6 months and -0.24% (-2.6 mmol/mol) at 24 months (both P < 0.001). This study shows that adults with type 1 diabetes in Sweden who initiate isCGM have significantly reduced hospitalization rates for acute diabetes events, kidney disease, and cardiovascular complications, along with improved glucose control, compared with BGM users.

Reducing strain on primary healthcare systems through innovative models of care: the impact of direct access physiotherapy for musculoskeletal conditions—an interrupted time series analysis

ObjectivesTo evaluate the longitudinal impact of introducing a national, direct access physiotherapy model of care on the rates of primary and secondary care consultations for musculoskeletal (MSK) conditions.DesignInterrupted time series...

Educational differences in years lived with disability due to mental and substance use disorders: a cohort study using nationwide Norwegian and Danish registries

BackgroundFindings from the Global Burden of Disease (GBD) study have shown that the burden of mental and substance use disorders is considerable, and unevenly distributed across demographic groups in the population. However, there is a lack of knowledge on how this burden differs by socioeconomic position. The aim of this study was to examine educational differences in years lived with disability (YLDs) from mental and substance use disorders among males and females in two high-income countries, taking comorbidity with other diseases into account.MethodsThe study included all registered residents in Denmark and Norway from 2011 to 2021. Diagnostic information was retrieved from records in the Norwegian National Patient Registry (NPR) and the Danish Psychiatric Central Research Register (PCRR) and used as proxy measures for disorder prevalence. Demographical and educational information was taken from administrative registries. The YLD is a measure of the non-fatal health loss in the population and was calculated by multiplying the duration of a disorder with a disability weight (DW), scaled between 0 and 1. Information on remission and DWs were retrieved from the GBD study and other sources, and disorder specific DWs were averaged by severity levels and adjusted for comorbidity.ResultsEducational gradients in YLD rates were found for mental and substance disorders overall, and for most of the specific disorders. The educational gradient was more pronounced for schizophrenia, intellectual disability and substance use disorders than for eating, anxiety, and affective disorders. Both higher YLD rates, and a larger attributed proportion of the total YLDs, were found for schizophrenia, intellectual disability, and substance use disorders in the groups with low versus high education. YLD rates for eating, anxiety, and affective disorders were more equal across educational levels, but constituted a smaller proportion of the total YLDs among the groups with low versus the groups with high educational level.ConclusionMost of the disease burden related to mental and substance use disorders falls on those with the fewest years of education. This should be taken into consideration when public health targets aimed at improving mental health and reducing social inequalities in health are developed and implemented.

Patients' use of Danish emergency medical services before and during the COVID-19 pandemic: a register-based study

BackgroundDuring the COVID-19 pandemic, disturbing images of ambulances unable to respond to the demands for prehospital assistance appeared from several parts of the world. In Denmark, however, a notion occurred that the demands for emergency medical assistance declined. The purpose of this study was to compare the patients' use of the Danish Emergency Medical Services (EMS) before and during the COVID-19 pandemic. Furthermore, we investigated the overall mortality of the ambulance population, the main reason for calling the emergency medical dispatch centre, and the diagnosis assigned to the admitted patients.MethodsThe study was a nationwide registry-based cohort study based on the national prehospital medical records and the Danish National Patient Registry. The primary outcome was the requested number of ambulances. Secondary outcomes included the primary reason for contact with the dispatch centre (reflected by the dispatch criteria), patient mortality, and the diagnoses assigned to the patients transported to the hospital by ambulance during the COVID-19 pandemic in Denmark in March–December 2020. Comparisons were made using a similar period in 2019 before the pandemic.ResultsIn comparison with the baseline values before the pandemic, the total number of patients treated by the EMS was reduced by 4.5% during the COVID-19 pandemic. The number of patients transported to the hospital during the pandemic was similarly reduced by 3.5%. Compared with baseline values, fewer were patients hospitalised with respiratory diseases during the pandemic (a reduction of 53.3% from April 2019 to April 2020).Compared to the baseline period, there were significant increases in both the 48-h mortality (from 1.4% to 1.5%) and the 30-day mortality (from 4.9% to 5.4%) (p < 0.03 and p < 0.001, respectively), in patients hospitalised during the pandemic.ConclusionDuring the first wave of the COVID-19 pandemic, the Danish EMS experienced an overall reduction in the requests for and the use of ambulances and, especially, in the number of patients admitted to hospitals for respiratory diseases. Despite the overall reduction in EMS requests, the mortality of the ambulance population increased, indicating that despite the reduced ambulance use, the prehospital population was more severely ill during the pandemic.

An eight-year follow-up study of Home Invasive Mechanical Ventilation in Finland

BackgroundStudies on long-term invasive mechanical ventilation (IMV) via tracheostomy in chronic respiratory insufficiency are limited. The aim of this study was to clarify the use of HIMV (home invasive mechanical ventilation) within the Finnish population and to analyze the characteristics and survival rate of HIMV patients from 2015 to 2022.MethodsData on HIMV patients was collected annually from all Finnish Hospital District patient registries between January 1, 2015, and December 31, 2022. Data included basic demographic data of the patients, underlying diagnosis, time from diagnosis to HIMV initiation, treatment duration, and mortality.ResultsThis study included 179 patients. In 2015, there were 107 HIMV patients, and as of December 31, 2022, there were 95 patients. During the eight-year follow-up period, 84 patients (46.9%) died and there were 67 new patients between 2015 and2022. The prevalence of HIMV treatment in Finland was 2.4/100,000 on January 1,2015, and 1.8/ 100 000 on December 31, 2022. The average number of years living with HIMV for deceased patients at death was 10.1 ± 10.5 years largely depending on the underlying diagnosis. Of all the HIMV treatments, 32% were elective.ConclusionsHIMV is a rare treatment in Finland, and based on our 8-year follow-up, prevalence of HIMV is diminishing. Given the high demands, and significant costs associated with HIMV, it is essential to prepare for long treatment, when planning HIMV. It is also advisable to prolong non-invasive ventilation (NIV) treatments for as long as possible.

SMArt Retro study: a retrospective data analysis of the Russian registry of patients with spinal muscular atrophy

Background. Existing registries of patients with spinal muscular atrophy (SMA) 5q serve as a valuable source of information on identified patients. Information on the characteristics of Russian patients with SMA 5q and the therapy administered in real clinical practice is currently limited.Aim. To describe a cohort of Russian patients with a confirmed diagnosis of SMA 5q and to evaluate patient routing data in real clinical practice settings in Russia.Materials and methods. The present study was a descriptive non-interventional retrospective cohort study in patients diagnosed with SMA 5q who were enrolled in the Russian patient registry between January 1, 2020 and March 31, 2023. Study participants who met the inclusion criteria were automatically identified in the integrated database of the SMA 5q patient registry. Data were uploaded into validated electronic charts, verified and analyzed using descriptive statistics methods. Results. As of March 31, 2023, the Russian SMA registry contained information on 1408 patients from all federal districts and obtained epidemiological, sociodemographic and clinical characteristics of patients, as well as routes to diagnosis and treatment regimens for patients. The median time from disease onset to confirmed diagnosis was 3 months in patients with SMA type 1, 9 months in patients with SMA type 2, 20 months in patients with SMA type 3 and 68 months in patients with SMA type 4. The median time from confirmed diagnosis to the start of disease-modifying therapy was 0.5 months in SMA patients identified by neonatal screening, 21 months in patients with SMA type 1, 59 months in patients with SMA type 2, 47 months in patients with SMA type 3 and 87 months in patients with SMA type 4.Conclusion. This retrospective analysis was carried out in order to identify recent approaches to the diagnosis and treatment of SMA used in real-world clinical practice in Russia. The identified parameters (duration from the disease onset to confirmed diagnosis, duration from the confirmed diagnosis to disease-modifying therapy initiation) indicate that more widespread use of newborn screening and more rapid treatment initiation are unmet needs for SMA patients in Russia.

Long-term impact of ivacaftor on mortality rate and health outcomes in people with cystic fibrosis

BackgroundIvacaftor (IVA) has been shown to improve lung function and other clinical outcomes in people with cystic fibrosis (CF). A decade of real-world IVA availability has enabled the examination of...