scholarly journals P134 Collaborating with the National Congenital Anomaly and Rare Disease Registration Service to estimate national incidence of Kawasaki disease in England

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Megan Rutter ◽  
Peter C Lanyon ◽  
Mary Bythell ◽  
Sarah Stevens ◽  
Jeanette Aston ◽  
...  
Keyword(s):  
Congenital Anomaly ◽  
Kawasaki Disease ◽  
Rare Disease ◽  
Adult Life ◽  
Population Based ◽  
Ivig Treatment ◽  
Diagnostic Code ◽  
University Hospitals ◽  
True Incidence ◽  
Registration Service

Abstract Background The true incidence of Kawasaki disease (KD) in England is unknown. In KD treatment with intravenous immunoglobulin (IVIG) can be lifesaving, but it is both expensive and in limited supply. In collaboration with Public Health England’s National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) we aimed to determine the incidence of KD in England. Methods We worked within NCARDRS to access patient-identifiable Hospital Episode Statistics (HES) data, enabled by their legal permissions (CAG 10-02(d)/2015). We extracted all patients receiving a primary or additional diagnostic code for KD between April 2003 -March 2017. For patients identified in Nottingham University Hospitals Trust, we reviewed the coding accuracy in their medical records. We calculated incidence with 95% Poisson confidence intervals among children in England using the total number of cases newly diagnosed in the study period. We used the ONS mid-year estimates for 2016 for the denominator. Results 37 patients were coded as having KD in our Trust. All had a clinical diagnosis of KD (positive predictive value 100%). 32 patients were paediatric cases treated for KD; the remaining 5 patients were diagnosed in adult life on the basis of pathognomonic angiogram findings. It was not possible to apply classification criteria because the required information was not always available. During the 13-year study period we identified 3345 cases in children aged <5, and 4234 cases in children <16 in England. The incidence in children aged <5 years was 7.50 (95% CI: 7.25-7.76)/100,000 person-years, and 40.7% of cases were female. Incidence in children aged <16 was 3.09 (95% CI: 3.00-3.19)/100,000 person-years, and 41% of cases were female. Conclusion Analysis of HES data within NCARDRS has provided population-based estimates of incidence of KD for the whole of England. Our estimates are higher than in previous studies. Validation of coding accuracy has shown our methods were specific, and they are likely to be sensitive given KD is always treated in hospital. Accurate incidence estimates are essential for appropriate resource allocation, given the limited availability of lifesaving IVIG treatment. Disclosures M. Rutter None. P.C. Lanyon None. M. Bythell None. S. Stevens None. J. Aston None. F.A. Pearce None.

Assessing longer-term health trends: disease registers

2020 ◽  
pp. 176-182
Author(s):  
Rachael Brock ◽  
Sarah Stevens ◽  
Jem Rashbass
Keyword(s):  
Congenital Anomaly ◽  
Rare Disease ◽  
Cancer Registration ◽  
Health Trends ◽  
Disease Register ◽  
Different Types ◽  
Registration Service

The objectives of this chapter are to: describe different types of disease register; explain the principles and requirements of disease registration; explore two examples of disease registration: cancer registration, and the English National Congenital Anomaly and Rare Disease Registration Service (NCARDRS); enable you to use disease registers effectively, with an awareness of their strengths and limitations.

scholarly journals O36 Validation of methods to enable national registration for rare autoimmune rheumatic diseases

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Fiona A Pearce ◽  
Megan Rutter ◽  
Bridget Griffiths ◽  
Chetan Mukhtyar ◽  
Reem Al-Jayoussi ◽  
...  
Keyword(s):  
Kawasaki Disease ◽  
Positive Predictive Value ◽  
Rare Disease ◽  
Rheumatic Diseases ◽  
Polyarteritis Nodosa ◽  
Predictive Value ◽  
Granulomatosis With Polyangiitis ◽  
Relapsing Polychondritis ◽  
Diagnostic Code ◽  
Autoimmune Rheumatic Diseases

Abstract Background The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) records those people with congenital anomalies and rare diseases across the whole of England. The NCARDRS Rare Rheumatology Project is establishing methodologies to identify and register people with rare rheumatic diseases. Hospital Episode Statistics (HES), comprising data from all admitted-patient NHS care in England, provides a promising source for case ascertainment. We aimed to confirm the reliability of diagnostic ICD codes for rare autoimmune rheumatic diseases within HES. Methods We used NCARDRS’ legal permissions (CAG 10-02(d)/2015) to extract cases who had at least one inpatient or daycase admission recorded in HES during 2003 to 2017 with a primary or additional diagnostic code for Kawasaki disease, Takayasu’s arteritis, Adult-onset Still’s disease, Relapsing polychondritis, Polyarteritis nodosa, Granulomatosis with polyangiitis (GPA), Microscopic polyangiitis (MPA) or Eosinophilic granulomatosis with polyangiitis (EGPA). Using Data Sharing Agreements between NCARDRS and NHS Trusts, we reviewed medical records for all cases admitted to one NHS Trust to confirm diagnoses. For ANCA-associated vasculitis (AAV), up to 20 randomly selected cases admitted to 5 Trusts with a diagnostic code of GPA, MPA and EGPA were reviewed. Results Table 1 shows the positive predictive value (PPV) of each diagnosis at one Trust: Kawasaki disease 100%, Takayasu’s arteritis 91.7%, Adult-onset Still’s disease 42.8%, Relapsing polychondritis 40.0%, and Polyarteritis nodosa 5.0%. For AAV, which had a PPV at the index Trust of 92.0%, the PPV across the 5 Trusts varied from 92.9% to 74.0%. Combining all 5 Trusts PPV for AAV was 85.9%. It was higher in MPA (PPV=98.4%) than in GPA (PPV=83.3%) and EGPA (PPV=77.4). Conclusion This is the first study to validate the coding of rare rheumatic disease diagnoses within HES data. Our results highlight heterogeneity in coding accuracy both between conditions and between NHS Trusts. Further work is needed to develop and validate algorithms for conditions where HES coding alone has poor positive predictive value, and test sensitivity. National rare disease registration will enable robust, cost-effective and reproducible population-based epidemiology of rare rheumatic diseases across England which is needed to inform service provision and aid development of new treatments. Disclosures F.A. Pearce None. M. Rutter None. B. Griffiths None. C. Mukhtyar None. R. Al-Jayoussi None. R.A. Watts None. J. Aston None. M. Bythell None. S. Stevens None. P.C. Lanyon None.

Divergence in the epidemiological estimates of traumatic brain injury in the United States: comparison of two national databases

2020 ◽  
pp. 1-10
Author(s):  
Brittany M. Stopa ◽  
Maya Harary ◽  
Ray Jhun ◽  
Arun Job ◽  
Saef Izzy ◽  
...  
Keyword(s):  
Traumatic Brain Injury ◽  
Emergency Department ◽  
Brain Injury ◽  
Data Bank ◽  
The United States ◽  
National Sample ◽  
Population Based ◽  
Weighted Estimates ◽  
True Incidence ◽  
Ed Visits

OBJECTIVETraumatic brain injury (TBI) is a leading cause of morbidity and mortality in the US, but the true incidence of TBI is unknown.METHODSThe National Trauma Data Bank National Sample Program (NTDB NSP) was queried for 2007 and 2013, and population-based weighted estimates of TBI-related emergency department (ED) visits, hospitalizations, and deaths were calculated. These data were compared to the 2017 Centers for Disease Control and Prevention (CDC) report on TBI, which used the Healthcare Cost and Utilization Project’s National (“Nationwide” before 2012) Inpatient Sample and National Emergency Department Sample.RESULTSIn the NTDB NSP the incidence of TBI-related ED visits was 59/100,000 in 2007 and 62/100,000 in 2013. However, in the CDC report there were 534/100,000 in 2007 and 787/100,000 in 2013. The CDC estimate for ED visits was 805% higher in 2007 and 1169% higher in 2013. In the NTDB NSP, the incidence of TBI-related deaths was 5/100,000 in 2007 and 4/100,000 in 2013. In the CDC report, the incidence was 18/100,000 in both years. The CDC estimate for deaths was 260% higher in 2007 and 325% higher in 2013.CONCLUSIONSThe databases disagreed widely in their weighted estimates of TBI incidence: CDC estimates were consistently higher than NTDB NSP estimates, by an average of 448%. Although such a discrepancy may be intuitive, this is the first study to quantify the magnitude of disagreement between these databases. Given that research, funding, and policy decisions are made based on these estimates, there is a need for a more accurate estimate of the true national incidence of TBI.

The Oxford Handbook of Integrative Health Science

2018 ◽  
Keyword(s):  
Adult Life ◽  
The United States ◽  
Sociodemographic Factors ◽  
Population Based ◽  
Health Science ◽  
National Study ◽  
Integrative Health ◽  
Social Structural ◽  
Research Population ◽  
Psychosocial Influences

This handbook signals a paradigm shift in health research. Population-based disciplines have employed large national samples to examine how sociodemographic factors contour rates of morbidity and mortality. Behavioral and psychosocial disciplines have studied the factors that influence these domains using small, nonrepresentative samples in experimental or longitudinal contexts. Biomedical disciplines, drawing on diverse fields, have examined mechanistic processes implicated in disease outcomes. The collection of chapters in this handbook embraces all such prior approaches and, via targeted questions, illustrates how they can be woven together. Diverse contributions showcase how social structural influences work together with psychosocial influences or experiential factors to impact differing health outcomes, including profiles of biological risk across distinct physiological systems. These varied biopsychosocial advances have grown up around the Midlife in the United States (MIDUS) national study of health, begun over 20 years ago and now encompassing over 12,000 Americans followed through time. The overarching principle behind the MIDUS enterprise is that deeper understanding of why some individuals remain healthy and well as they move across the decades of adult life, while others succumb to differing varieties of disease, dysfunction, or disability, requires a commitment to comprehensiveness that attends to the interplay of multiple interacting influences. Put another way, all of the disciplines mentioned have reliably documented influences on health, but in and of themselves, each is inherently limited because it neglects factors known to matter for health outside the discipline’s purview. Integrative health science is the alternative seeking to overcome these limitations.

scholarly journals Desquamation in Kawasaki Disease

Children ◽  
2021 ◽  
Vol 8 (5) ◽  
pp. 317
Author(s):  
Ling-Sai Chang ◽  
Ken-Pen Weng ◽  
Jia-Huei Yan ◽  
Wan-Shan Lo ◽  
Mindy Ming-Huey Guo ◽  
...  
Keyword(s):  
Coronary Artery ◽  
Kawasaki Disease ◽  
Laboratory Data ◽  
Ivig Treatment ◽  
Low Grade ◽  
High Grade ◽  
Laboratory Findings ◽  
Coronary Artery Abnormalities ◽  
Cell Counts ◽  
Hands And Feet

(1) Background: Desquamation is a common characteristic of Kawasaki disease (KD). In this study, we analyzed patients’ varying desquamation levels in their hands or feet, in correlation with clinical presentation, to assess the relationship. (2) Methods: We retrospectively reviewed children with KD. We analyzed their age, laboratory data before intravenous immunoglobulin (IVIG) treatment and coronary artery abnormalities (CAA) based on the desquamation level of their hands and feet. We classified the desquamation level from 0 to 3 and defined high-grade desquamation as grade 2 and 3. (3) Results: We enrolled a total 112 patients in the study. We found the hands’ high-grade desquamation was positively associated with age and segmented neutrophil percentage (p = 0.047 and 0.029, respectively) but negatively associated with lymphocyte and monocyte percentage (p = 0.03 and 0.006, respectively). Meanwhile, the feet’s high-grade desquamation was positively associated with total white blood cell counts (p = 0.033). Furthermore, we found that high-grade hand desquamation had less probability of CAA formation compared with that of a low grade (7.1% vs. 40.8%, p = 0.016). (4) Conclusions: This report is the first to demonstrate that the desquamation level of hands or feet in KD is associated with different coronary artery abnormalities and laboratory findings.

scholarly journals Intravenous Immunoglobulin Treatment in Kawasaki Disease Decreases the Incidence of Myopia

2021 ◽  
Vol 10 (7) ◽  
pp. 1381
Author(s):  
Hun-Ju Yu ◽  
Meng-Ni Chuang ◽  
Chiao-Lun Chu ◽  
Pei-Lin Wu ◽  
Shu-Chen Ho ◽  
...  
Keyword(s):  
Kawasaki Disease ◽  
Intravenous Immunoglobulin ◽  
Systemic Vasculitis ◽  
Age Distribution ◽  
Population Based ◽  
Research Database ◽  
Ocular Manifestations ◽  
Missing Data Treatment ◽  
The Difference ◽  
Age Range

Kawasaki disease (KD) is a systemic vasculitis that primarily affects children under the age of 5 years old. The most significant complication is coronary artery lesions, but several ocular manifestations have also been reported. Recently, one study revealed an increasing incidence of myopia among KD patients. Therefore, the aim of this study was to assess the difference in myopic incidence between Kawasaki disease (KD) patients treated with aspirin and intravenous immunoglobulin (IVIG). Materials and methods: We carried out a nationwide retrospective cohort study by analyzing the data of KD patients (ICD-9-CM code 4461) from Taiwan’s National Health Insurance Research Database (NHIRD) during the period of 1996–2013. Results: A total of 14,102 diagnosed KD were found in Taiwan during the study period. After excluded missing data, treatment strategy and age distribution, a total of 1446 KD patients were enrolled for analysis including 53 of which received aspirin (without IVIG) and 1393 of which were treated with IVIG. Patients who had myopia, astigmatism, glaucoma, cataract, etc. prior to their KD diagnosis were excluded. The age range was 0 to 6 years old. According to the cumulative curves, our results demonstrated that the myopic incidence in the IVIG group was significantly lower than the aspirin group (hazard ratio: 0.59, 95% confidence intervals: 0.36~0.96, p = 0.02). Treatment with IVIG for KD patients may have benefit for myopia control. Conclusion: Compared to aspirin, IVIG may decrease the myopic risk in KD patients. However, it needs further investigation including clinical vision survey of myopia due to the limitations of this population-based study.

scholarly journals Multimorbidity and leisure-time physical activity over the life course: a population-based birth cohort study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Natan Feter ◽  
Jayne S. Leite ◽  
Daniel Umpierre ◽  
Eduardo L. Caputo ◽  
Airton J. Rombaldi
Keyword(s):  
Physical Activity ◽  
Life Course ◽  
Leisure Time ◽  
Leisure Time Physical Activity ◽  
Adult Life ◽  
Population Based ◽  
Independent Effect ◽  
Sensitive Period ◽  
Birth Cohort Study ◽  
Saturated Model

Abstract Background We aimed to test which life course model best described the association between leisure-time physical activity (LTPA) and multimorbidity at age 55. We analyzed data from birth to age 55 using the database from the 1958 National Child Development Survey. Methods Multimorbidity was considered as the presence of more than one chronic condition. LTPA was measured through questionnaires from 1965 (age 7) to 2013 (age 55), which were applied in eight different occasions. We compared the fit of a series of nested adjusted logistic regression models (representing either the critical, accumulation or sensitive period models) with a fully saturated model. Data were reported as odds ratio (OR) and 95% confidence interval (CI). Results From an eligible sample of 15,613 cohort members, 9137 were interviewed in the latest sweep (58.5%). Men were more physically active than women at ages 11, 16, and 23 (p < 0.001). LTPA every day in the week was more frequent in women than men in ages 33, 42, and 50 (p < 0.001). The prevalence of multimorbidity at age 55 was 33.0% (n = 2778). The sensitive analysis revealed that LTPA during adolescence (OR: 0.83; 95% CI: 0.70, 0.98) and mid adult life (age 50 and 55; OR: 0.82; 95%CI: 0.69, 0.98) have a stronger effect on the risk for multimorbidity at age 55 considering all other life stages in the model. Also, adolescence showed a critical independent effect on the risk for multimorbidity (OR: 0.82; 95%CI: 0.70, 0.97). No difference was found between those models. Conclusions These data support the notion of a protective physical activity “legacy” at early ages of childhood against multimorbidity at older ages. We highlight the need for LTPA promotion through intervention tailored especially on schooling and older ages in order to reduce the burden of multimorbidity.

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