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  • 1
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    COVID-19 infection, admission and death among people with rare autoimmune rheumatic disease in England: results from the RECORDER project
    Oxford University Press (OUP) ; 2022
    In:  Rheumatology Vol. 61, No. 8 ( 2022-08-03), p. 3161-3171
    Details
    In: Rheumatology, Oxford University Press (OUP), Vol. 61, No. 8 ( 2022-08-03), p. 3161-3171
    Abstract: To calculate the rates of COVID-19 infection and COVID-19-related death among people with rare autoimmune rheumatic diseases (RAIRD) during the first wave of the COVID-19 pandemic in England compared with the general population. Methods We used Hospital Episode Statistics to identify all people alive on 1 March 2020 with ICD-10 codes for RAIRD from the whole population of England. We used linked national health records (demographic, death certificate, admissions and PCR testing data) to calculate rates of COVID-19 infection and death up to 31 July 2020. Our primary definition of COVID-19-related death was mention of COVID-19 on the death certificate. General population data from Public Health England and the Office for National Statistics were used for comparison. We also describe COVID-19-related hospital admissions and all-cause deaths. Results We identified a cohort of 168 680 people with RAIRD, of whom 1874 (1.11%) had a positive COVID-19 PCR test. The age-standardized infection rate was 1.54 (95% CI: 1.50, 1.59) times higher than in the general population. A total of 713 (0.42%) people with RAIRD died with COVID-19 on their death certificate and the age-sex-standardized mortality rate for COVID-19-related death was 2.41 (2.30–2.53) times higher than in the general population. There was no evidence of an increase in deaths from other causes in the RAIRD population. Conclusions During the first wave of COVID-19 in England, people with RAIRD had a 54% increased risk of COVID-19 infection and more than twice the risk of COVID-19-related death compared with the general population. These increases were seen despite shielding policies.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/keab794
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2022
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  • 2
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    COVID-19 infection, admission and death and the impact of corticosteroids among people with rare autoimmune rheumatic disease during the second wave of COVID-19 in England: results from the RECORDER Project
    Oxford University Press (OUP) ; 2023
    In:  Rheumatology ( 2023-04-05)
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    In: Rheumatology, Oxford University Press (OUP), ( 2023-04-05)
    Abstract: To calculate the rates of COVID-19 infection and COVID-19-related death among people with rare autoimmune rheumatic diseases (RAIRD) during the second wave of the COVID-19 pandemic in England, and describe the impact of corticosteroids on outcomes. Methods Hospital Episode Statistics data were used to identify people alive on 1 August 2020 with ICD-10 codes for RAIRD from the whole population of England. Linked national health records were used to calculate rates and rate ratios of COVID-19 infection and death up to 30 April 2021. Primary definition of COVID-19-related death was mention of COVID-19 on the death certificate. NHS Digital and Office for National Statistics general population data were used for comparison. The association between 30-day corticosteroid usage and COVID-19-related death, COVID-19-related hospital admissions and all-cause deaths was also described. Results Of 168 330 people with RAIRD, 9961 (5.92%) had a positive COVID-19 PCR test. The age-standardized infection rate ratio between RAIRD and the general population was 0.99 (95% CI: 0.97, 1.00). 1342 (0.80%) people with RAIRD died with COVID-19 on their death certificate and the age–sex-standardized mortality rate for COVID-19-related death was 2.76 (95% CI: 2.63, 2.89) times higher than in the general population. There was a dose-dependent relationship between 30-day corticosteroid usage and COVID-19-related death. There was no increase in deaths due to other causes. Conclusions During the second wave of COVID-19 in England, people with RAIRD had the same risk of COVID-19 infection but a 2.76-fold increased risk of COVID-19-related death compared with the general population, with corticosteroids associated with increased risk.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/kead150
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2023
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  • 3
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    The incidence of Kawasaki disease using hospital admissions data for England 2006–2021
    Oxford University Press (OUP) ; 2023
    In:  Rheumatology Vol. 62, No. 9 ( 2023-09-01), p. 3117-3125
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    In: Rheumatology, Oxford University Press (OUP), Vol. 62, No. 9 ( 2023-09-01), p. 3117-3125
    Abstract: To describe the incidence of Kawasaki Disease (kDa) between 2006 and 2021 in England. Methods We identified all cases in hospital episode statistics with an ICD-10 diagnostic code M303 (for kDa) between 1 April 2006 and 31 March 2021. We validated 83 diagnoses using hospital medical records and found & gt;97% accuracy. We calculated incidence rate ratios (IRRs) using Poisson regression and assessed the influence of age, sex, ethnicity and index of multiple deprivation (IMD). We used Office for National Statistics population estimates for England as the denominator. Results We identified a total of 5908 cases of kDa in all children under the age of 16 (mean age 3.8, s.d.=3.2, 95% CI: 3.7, 3.9). Incidence in children aged & lt;5 years was 8.9 (95% CI: 8.6, 9.2)/100 000 person-years; in children aged 5–9, 2.4 (95% CI: 2.3, 2.6)/100 000 person-years; and in children aged 10–15, 0.6 (95% CI: 0.6, 0.7). Male : female ratio was 1.5 : 1. Incidence was higher among non-White than White ethnicities [adjusted IRR 2.1 (2.0–2.2) for Asian, 3.0 (2.8–3.3) for Black and 4.5 (4.2–4.8) for other ethnicities]. The incidence increased with socioeconomic deprivation; the adjusted IRR of the least deprived IMD quintile compared with the most deprived quintile was 0.8 1 (0.77–0.84). Conclusions Incidence rates of kDa derived from hospital admission data in England were higher than in studies relying on clinician reporting. We confirm previous findings on the influence of sex and ethnicity on kDa incidence and observe that there was a higher incidence of kDa within more deprived socioeconomic groups.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/kead051
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2023
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  • 4
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    P300 Comparison of birth rates, gestational diabetes and non-standard maternal deliveries between Takayasu arteritis patients and the England and Wales population
    Oxford University Press (OUP) ; 2022
    In:  Rheumatology Vol. 61, No. Supplement_1 ( 2022-04-23)
    Details
    In: Rheumatology, Oxford University Press (OUP), Vol. 61, No. Supplement_1 ( 2022-04-23)
    Abstract: Takayasu arteritis (TAK) is a chronic, inflammatory vasculitis of the aorta and primary branches, particularly prevalent in women of childbearing age. We studied pregnancy outcomes for women with TAK compared to the general population. Methods All people in England with an ICD-10 diagnostic code for TAK 1997/98 to 2020/21 were identified from Hospital Episode Statistics (HES) using National Congenital Abnormality and Rare Disease Registration Service (NCARDRS) data (CAG 10-02(d)/2015). To improve precision of estimated date of diagnosis, we used an English hospital case register of 122 TAK patients. We analysed all HES admissions occurring after their clinician-confirmed diagnosis date and before their first TAK ICD code in HES to identify codes which indicated likely TAK-related activity, and then applied these to the whole NCARDRS cohort. Maternity-related ICD-10 and OPCS-4 code admissions after the estimated diagnosis date were extracted and age-specific values were calculated for number of births, TAK patient years and birth rates. ONS published national data was used for comparison. Results We identified 1,437 people with TAK. Between 2001 and 2021, there were 133 babies born (129 singleton, 2 twin births, no stillbirths) to 85 mothers. Mean maternal age at first delivery was 32.2 years (SD 5.3, median 33.2), above the UK mean of 27.8, with age-specific birth rates compared to the 2019 general population (see table). Overall birth rate in women with TAK was 68% of the national England/Wales rate. Gestational diabetes (GDM) was present in 13/131 (9.9%) but large variation in UK prevalence estimates makes national comparison difficult. Mothers with GDM had a median age of 37 and delivery was by C-section in 9/13 cases. For non-GDM, 50% (95% CI: 41%, 59%) were C-section; this is significantly higher than the UK level of 26%. 12% were vacuum and/or forceps assisted deliveries, approximately equal to the general population. Conclusion The birth rate in women with TAK is lower than the general population and C-section rates higher. Causes are complex and might include patient choice, reduced fertility related to cytotoxic treatment, or physician recommendation, highlighting the importance of equitable access to specialist pre-conception counselling for people with rare autoimmune diseases. Disclosure D.J. Groves: None. M. Rutter: None. P.C. Lanyon: None. M. Odingo: None. M.J. Grainge: None. M. Bythell: None. J. Aston: None. S. Stevens: None. J.R. Hannah: None. J. Mason: None. F.A. Pearce: None.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/keac133.299
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2022
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  • 5
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    O36 Validation of methods to enable national registration for rare autoimmune rheumatic diseases
    Oxford University Press (OUP) ; 2020
    In:  Rheumatology Vol. 59, No. Supplement_2 ( 2020-04-01)
    Details
    In: Rheumatology, Oxford University Press (OUP), Vol. 59, No. Supplement_2 ( 2020-04-01)
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/keaa110.035
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
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  • 6
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    P054 Risk of death during the 2020 UK COVID-19 epidemic among people with rare diseases compared to the general population
    Oxford University Press (OUP) ; 2021
    In:  Rheumatology Vol. 60, No. Supplement_1 ( 2021-04-25)
    Details
    In: Rheumatology, Oxford University Press (OUP), Vol. 60, No. Supplement_1 ( 2021-04-25)
    Abstract: Background/Aims  To quantify the risk of death among people with rare autoimmune rheumatic diseases (RAIRD) during the UK 2020 COVID-19 epidemic compared with baseline risk and the risk of death in the general population during COVID-19. Methods  A cohort study was performed using data from the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). Coded diagnoses for RAIRD were identified from Hospital Episode Statistics from 2003 onwards. Previous coding validation work demonstrated our case ascertainment methods had a positive predictive value & gt;85%. ONS published data were used for general population mortality rates. The main outcome measure was age-standardised mortality rates (ASMRs) for all-cause death. Secondary outcome measures were age-sex standardised mortality rates, and age-stratified mortality rates. Results  168,691 people with RAIRD were alive on 1 March 2020. Their median age was 61.7 (IQR 41.5-75.4) years, and 118,379 (70.2%) were female. 1,815 (1.1%) people with RAIRD died during March and April 2020. The ASMR among people with RAIRD was 3669.3 (95% CI 3500.4-3838.1) per 100,000 person-years, which was 1.44 (95% CI 1.42-1.45) times higher than the average ASMR during the same months of the previous 5 years. In the whole population of England, the ASMR during March and April 2020 was 1361.1 (1353.6- 1368.7) per 100,000 people, which was 1.38 times higher than the average ASMR during the same months of the previous 5 years (see related abstract about influenza seasons). Unlike in the general population, sex-specific rates in RAIRD were similar in males and females. When comparing risk of death during COVID-19 to pre-COVID-19, people with RAIRD had an increased risk of death from age 35 upwards, compared to around age 55 upwards in the general population. As the protective effect of being female was not seen in RAIRD, the group at the largest increased risk compared to their pre-COVID-19 risk were women aged 35 upwards. The absolute risk of all-cause death for someone aged 20-29 with RAIRD was similar to someone in the general population aged & gt;20 years older, someone aged 40-49 years with RAIRD similar to someone in the general population 20 years older, and someone aged 60-69 with RAIRD similar to someone in the general population aged & gt;10 years older. Conclusion  The excess risk of all-cause death during COVID-19 occurs at a younger age among people with RAIRD than among the general population, and particularly affects females. . We urgently need to quantify how much risk is due to COVID-19 infection and how much due to disruption to healthcare services to inform better guidance about shielding, access to healthcare and vaccine priorities for people with rare diseases. Disclosure  M. Rutter: None. P.C. Lanyon: None. E. Peach: None. M.J. Grainge: None. R.B. Hubbard: None. J. Aston: None. M. Bythell: None. S. Stevens: None. F.A. Pearce: None.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/keab247.051
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
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  • 7
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    P182 Prevalence and mortality of ANCA-associated vasculitis in England
    Oxford University Press (OUP) ; 2020
    In:  Rheumatology Vol. 59, No. Supplement_2 ( 2020-04-01)
    Details
    In: Rheumatology, Oxford University Press (OUP), Vol. 59, No. Supplement_2 ( 2020-04-01)
    Abstract: The contemporary prevalence of ANCA-associated vasculitis (AAV) in England is unknown. Hospital Episode Statistics (HES) contain data on every hospital and day case NHS admission in England since 1997. In collaboration with the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) we validated the diagnosis of AAV using ICD codes in HES. The positive predictive value of these codes was 86%, which compares favourably to a median coding accuracy of 80% in a recent systematic review of NHS coding studies. This justifies using this novel dataset for population-based epidemiology with coverage of the whole population of England. Methods We worked within NCARDRS enabled by their Section 251 legal permissions (CAG 10-02(d)/2015). We extracted all cases of AAV from HES 2011/12 to 2016/17 using ICD-10 codes M313 Granulomatosis with polyangiitis (GPA), M317 Microscopic polyangiitis (MPA), and M301 Eosinophilic granulomatosis with polyangiitis (EGPA). We used the Summary Care Record to check vital status and record date of death where appropriate. We estimated point prevalence on 1 July 2016 using ONS mid-year population estimates for England in 2016 as the denominator. Standardised mortality ratio (SMR) was calculated using the Office for National Statistics death summary tables 2016 to provide expected number of deaths for each 5-year age-band and sex. Results We identified 9,890 patients who were coded as having AAV during a hospital admission 2011-2017. This included 6,856 (69.3%) with GPA, 964 (9.8%) with MPA and 2,070 (20.9%) with EGPA. On 1 July 2016, our dataset found 8,040 people in England were living with ANCA associated vasculitis. We estimate the prevalence was 14.55 (95% CI: 14.23-14.87)/100,000 adult population. The median age of these patients was 65.3 years (interquartile range 52.3-74.2). 47% were female. The prevalence of GPA was 9.97/100.000 (95% CI: 9.71-10.24), MPA was 1.40/100,000 (95% CI: 1.30-1.50), and EGPA was 3.18/100,000 (95% CI: 3.03-3.33). People with AAV were 4.6 times more likely to die than the background population of the same age and sex (Standardised Mortality Ratio = 4.58). Conclusion There are no recent UK prevalence estimates for all types of ANCA-associated vasculitis. Studies in Australia, Germany, Southern Sweden and the USA have found estimated prevalence to be between 4.6-18.4 cases per 100,000 individuals. Our estimate of 14.6/100,000 in England is consistent with this, and towards the higher end of the range. However, our estimates underestimate the prevalence of MPA compared to other studies, and further work is needed to increase the routine identification of cases of MPA. Further work within NCARDRS using their unique data linkages will enable more specific AAV case ascertainment as well as nationwide population-based studies on cause of death and studies using the database of English prescriptions dispensed in the community. Disclosures F.A. Pearce 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.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/keaa111.177
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
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  • 8
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    P134 Collaborating with the National Congenital Anomaly and Rare Disease Registration Service to estimate national incidence of Kawasaki disease in England
    Oxford University Press (OUP) ; 2020
    In:  Rheumatology Vol. 59, No. Supplement_2 ( 2020-04-01)
    Details
    In: Rheumatology, Oxford University Press (OUP), Vol. 59, No. Supplement_2 ( 2020-04-01)
    Abstract: 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 & lt;5, and 4234 cases in children & lt;16 in England. The incidence in children aged & lt;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 & lt;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.
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/keaa111.129
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
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  • 9
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    O24 Risk of death during the 2020 UK COVID-19 epidemic and annual influenza seasons among people with vasculitis compared to the general population: a whole-population study using data from the NDRS and the RECORDER project
    Oxford University Press (OUP) ; 2021
    In:  Rheumatology Vol. 60, No. Supplement_1 ( 2021-04-25)
    Details
    In: Rheumatology, Oxford University Press (OUP), Vol. 60, No. Supplement_1 ( 2021-04-25)
    Abstract: Background/Aims  To quantify the risk of death among people with vasculitis during the UK 2020 COVID-19 epidemic compared with baseline risk, risk during annual influenza seasons and risk of death in the general population during COVID-19. Methods  We performed a cohort study using data from the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) under their legal permissions (CAG 10-02(d)/2015). Coded diagnoses for vasculitis (ANCA-associated vasculitis, Takayasu arteritis, Behçet's disease, and giant cell arteritis) were identified from Hospital Episode Statistics from 2003 onwards. Previous coding validation work demonstrated a positive predictive value & gt;85%. The main outcome measure was age-standardised mortality rates (ASMRs) for all-cause death. ONS published data were used for general population mortality rates. Results  We identified 55,110 people with vasculitis (median age 74.9 (IQR 64.1-82.7) years, 68.0% female) alive 01 March 2020. During March-April 2020, 892 (1.6%) died of any cause. The crude mortality rate was 9773.0 (95% CI 9152.3-10,435.9) per 100,000 person-years. The ASMR was 2567.5 per 100,000 person-years, compared to 1361.1 (1353.6-1368.7) in the general population (see table). The ASMR in March-April 2020 was 1.4 times higher than the mean ASMR for March-April 2015-2019 (1965.6). The increase in deaths during March-April 2020 occurred at a younger age than in the general population. We went on to investige the effect of previous influenza seasons. The 2014/15 season saw the greatest excess all-cause mortality nationally in recent years, and there were 624 deaths in 38,888 people (6472.5 person-years) with vasculitis in our data (crude mortality rate 9640.8 (8913.3-10427.7); The ASMR was 2657.6, which was marginally higher than the ASMR among people with vasculitis recorded during March-April 2020 during the COVID-19 pandemic. Conclusion  People with vasculitis are at increased risk of death during circulating COVID-19 and influenza epidemics. The ASMR among people with vasculitis was high both during the 2014/15 influenza season and during the first wave of the COVID-19 epidemic. COVID-19 vaccination and annual influenza vaccination for people with vasculitis are both important, regardless of patient age. Disclosure  M. Rutter: None. P.C. Lanyon: Grants/research support; PCL has received funding for research from Vifor Pharma.. M.J. Grainge: None. R.B. Hubbard: None. E.J. Peach: Grants/research support; EJP has received funding for research from Vifor Pharma. M. Bythell: None. J. Aston: None. S. Stevens: None. F.A. Pearce: Grants/research support; FAP has received funding for research from Vifor Pharma..
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/keab246.023
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
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