scholarly journals Risk of death among people with rare autoimmune diseases compared to the general population in England during the 2020 COVID-19 pandemic

Rheumatology ◽  
2020 ◽  
Author(s):  
Emily Peach ◽  
Megan Rutter ◽  
Peter Lanyon ◽  
Matthew J Grainge ◽  
Richard Hubbard ◽  
...  

Abstract Objectives To quantify the risk of death among people with rare autoimmune rheumatic diseases (RAIRD) during the UK 2020 COVID-19 pandemic compared with the general population, and compared with their pre-COVID risk. Methods We conducted a cohort study in Hospital Episode Statistics for England 2003 onwards, and linked data from the NHS Personal Demographics Service. We used ONS published data for general population mortality rates. Results We included 168 691 people with a recorded diagnosis of RAIRD alive on 01/03/2020. Their median age was 61.7 (IQR 41.5–75.4) years, and 118 379 (70.2%) were female. Our case ascertainment methods had a positive predictive value of 85%. 1,815 (1.1%) participants died during March and April 2020. The age-standardised mortality rate (ASMR) among people with RAIRD (3669.3, 95% CI 3500.4–3838.1 per 100 000 person-years) was 1.44 (95% CI 1.42–1.45) times higher than the average ASMR during the same months of the previous 5 years, whereas in the general population of England it was 1.38 times higher. Age-specific mortality rates in people with RAIRD compared with the pre-COVID rates were higher from the age of 35 upwards, whereas in the general population the increased risk began from age 55 upwards. Women had a greater increase in mortality rates during COVID-19 compared with men. Conclusion The risk of all-cause death is more prominently raised during COVID-19 among people with RAIRD than among the general population. We urgently need to quantify how much risk is due to COVID-19 infection and how much is due to disruption to healthcare services.

Author(s):  
Emily Peach ◽  
Megan Rutter ◽  
Peter Lanyon ◽  
Matthew J Grainge ◽  
Richard Hubbard ◽  
...  

AbstractObjectivesTo quantify the risk of death among people with rare autoimmune rheumatic diseases (RAIRD) during the UK 2020 COVID-19 pandemic compared to the general population, and compared to their pre-COVID risk.MethodsWe conducted a cohort study in Hospital Episode Statistics for England 2003 onwards, and linked data from the NHS Personal Demographics Service. We used ONS published data for general population mortality rates.ResultsWe included 168,691 people with a recorded diagnosis of RAIRD alive on 01/03/2020. Their median age was 61.7 (IQR 41.5-75.4) years, and 118,379 (70.2%) were female. Our case ascertainment methods had a positive predictive value of 85%. 1,815 (1.1%) participants died during March and April 2020. The age-standardised mortality rate (ASMR) among people with RAIRD (3669.3, 95% CI 3500.4-3838.1 per 100,000 person-years) was 1.44 (95% CI 1.42-1.45) times higher than the average ASMR during the same months of the previous 5 years, whereas in the general population of England it was 1.38 times higher. Age-specific mortality rates in people with RAIRD compared to the pre-COVID rates were higher from the age of 35 upwards, whereas in the general population the increased risk began from age 55 upwards. Women had a greater increase in mortality rates during COVID-19 compared to men.ConclusionThe risk of all-cause death is more prominently raised during COVID-19 among people with RAIRD than among the general population. We urgently need to quantify how much risk is due to COVID-19 infection and how much is due to disruption to healthcare services.Key messagesPeople with RAIRD had an increased risk of dying during COVID-19 from age 35 years onwards, whereas in the general population it increased from the age of 55 onwards.Women had a greater increase in their risk of death during COVID-19 compared to men.The risk of working age people with RAIRD dying during COVID-19 was similar to that of someone 20 years older in the general population.


Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Megan Rutter ◽  
Peter C Lanyon ◽  
Emily Peach ◽  
Matthew J Grainge ◽  
Richard B Hubbard ◽  
...  

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 >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 >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 >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.


Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Megan Rutter ◽  
Peter C Lanyon ◽  
Matthew J Grainge ◽  
Richard B Hubbard ◽  
Emily J Peach ◽  
...  

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 >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..


2017 ◽  
Vol 77 (1) ◽  
pp. 85-91 ◽  
Author(s):  
Marie Holmqvist ◽  
Lotta Ljung ◽  
Johan Askling

ObjectiveTo investigate if, and when, patients diagnosed with rheumatoid arthritis (RA) in recent years are at increased risk of death.MethodsUsing an extensive register linkage, we designed a population-based nationwide cohort study in Sweden. Patients with new-onset RA from the Swedish Rheumatology Quality Register, and individually matched comparators from the general population were followed with respect to death, as captured by the total population register.Results17 512 patients with new-onset RA between 1 January 1997 and 31 December 2014, and 78 847 matched general population comparator subjects were followed from RA diagnosis until death, emigration or 31 December 2015. There was a steady decrease in absolute mortality rates over calendar time, both in the RA cohort and in the general population. Although the relative risk of death in the RA cohort was not increased (HR=1.01, 95% CI 0.96 to 1.06), an excess mortality in the RA cohort was present 5 years after RA diagnosis (HR after 10 years since RA diagnosis=1.43 (95% CI 1.28 to 1.59)), across all calendar periods of RA diagnosis. Taking RA disease duration into account, there was no clear trend towards lower excess mortality for patients diagnosed more recently.ConclusionsDespite decreasing mortality rates, RA continues to be linked to an increased risk of death. Thus, despite advancements in RA management during recent years, increased efforts to prevent disease progression and comorbidity, from disease onset, are needed.


2019 ◽  
Vol 111 (9) ◽  
pp. 961-969 ◽  
Author(s):  
Ruth A Kleinerman ◽  
Margaret A Tucker ◽  
Byron S Sigel ◽  
David H Abramson ◽  
Johanna M Seddon ◽  
...  

Abstract Background Previous studies of hereditary retinoblastoma survivors have reported elevated mortality, particularly for sarcomas, compared with the general population. However, cause-specific mortality patterns for long-term hereditary and nonhereditary retinoblastoma survivors are poorly understood. Methods Among 2053 retinoblastoma patients diagnosed during 1914–2006 at two major US treatment centers and followed to 2016, we estimated cumulative mortality, standardized mortality ratios (SMRs), and absolute excess risks (AERs) compared with the US general population. Results Most deaths occurred in 1129 hereditary retinoblastoma patients (n = 518 deaths, cumulative mortality 70 years after retinoblastoma = 75.8%, 95% CI = 69.0% to 82.6%; SMR = 8.5, 95% CI = 7.7 to 9.2). Of these, 267 were due to subsequent cancers (SMR = 27.4, 95% CI = 24.2 to 30.9; AER = 72.3 deaths/10 000 person-years), for which SMRs were highest 15–29 years after diagnosis (n = 69, SMR = 89.9, 95% CI = 70.0 to 113.8) but remained statistically significantly elevated at 60 and more years (n = 14, SMR = 6.7, 95% CI = 3.6 to 11.2), whereas AERs increased with time (AER<15years = 38.0; AER60+years = 327.5). Increased risk of death due to cancers of pancreas, large intestines, and kidney were noted for the first time. Overall risk of subsequent cancers was greater for those treated with radiotherapy and chemotherapy compared to radiotherapy alone, although patterns varied by organ site. For 924 patients with nonhereditary retinoblastoma, we noted a modestly increased risk of death for subsequent cancers (n = 27, SMR = 1.8, 95% CI = 1.2 to 2.6) possibly due to treatment or misclassification of hereditary status. Risks of noncancer causes of death were not elevated for hereditary or nonhereditary patients. Conclusion Hereditary retinoblastoma survivors died mainly from an excess risk of subsequent cancers up to six decades later, highlighting the need to develop long-term clinical management guidelines for hereditary retinoblastoma survivors treated in the past.


Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 606-606
Author(s):  
Saro H. Armenian ◽  
Can-Lan Sun ◽  
Tabitha Vase ◽  
George Mills ◽  
Liezl Atencio ◽  
...  

Abstract Abstract 606 Background: alloHCT is offered with curative intent to patients with hematologic malignancies, and conventionally-computed survival estimates are offered for prognosticating outcomes. However, conventionally-computed survival estimates do not take into account elapsed time (and changing hazards with time survived); conditional survival overcomes these limitations, by calculating the probability of survival after having already survived a certain period of time – such data are unavailable for alloHCT recipients. We describe cause-specific (relapse-, GvHD-, treatment-related) conditional survival after alloHCT, providing clinically relevant information for patients who have survived 6 mos, 1, 2, and 5y after alloHCT. Methods: From 1976 to 2006, 2,427 consecutive patients received alloHCT for a hematologic malignancy at a single institution (median age: 34.7y [0.6–72.5]). Vital status and cause of death were determined using National Death Index, Social Security Death Index and medical records. Results: As of 12/31/2007, a total of 1413 deaths (58% of the cohort) were observed; 39% attributed to recurrent disease; 34% to GvHD; 12% to infection; 5% to cardiopulmonary disease; 2% to subsequent malignant neoplasm (SMNs); and 8% to other causes. Conventionally-computed probability of survival was 44.6% at 5y and 41.2% at 10y from alloHCT. On the other hand, conditional on survival for 6 mo, 1, 2, and 5y after alloHCT, 5-y survival rates were 62%, 75%, 83%, and 93%, respectively (Figure A). The cohort was at a 40-fold increased risk of any death compared with the general population (95%CI=38.2–42.4); at a 25.6-fold increased risk of death due to pulmonary complications, 3.3-fold risk due to SMNs, and 2.3-fold risk due to cardiovascular complications. Among patients followed for 15+y after HCT, the risk of all-cause mortality was 2.6-fold that of the general population (95%CI=1.8–3.7). Standardized mortality ratios (SMR) and cause-specific conditional mortality rates by primary diagnosis are summarized in the Table. Individuals who survived the first 5y had negligible (≤5%) risk of relapse- and GvHD-related mortality over the subsequent 5y. Treatment-related mortality increased over time; among those who survived 5y, treatment-related mortality rates exceeded relapse-related mortality (Figure B). After adjustment for demographics, underlying diagnosis and treatment era, individuals with chronic GVHD (cGVHD) had a significantly lower risk of relapse-related mortality (RR=0.43, 95%CI=0.4–0.5) compared to those without cGVHD. Conclusions: The projected 5-y survival rates improve conditional on time survived from alloHCT; 5-y survival exceeds 93% for those who have already survived 5y. However, alloHCT recipients who have survived 15+y continue to remain at increased risk of death compared to the general population. cGVHD is associated with decreased risk of relapse-related mortality. Both relapse-related and GvHD-related mortality rates decline with time, such that, among those who have survived 5y, treatment-related mortality exceeds relapse-related mortality. Conditional survival estimates provide clinically relevant prognostic information, helping inform preventive and interventional strategies. Disclosures: No relevant conflicts of interest to declare.


Lupus ◽  
2020 ◽  
Vol 29 (14) ◽  
pp. 1892-1901
Author(s):  
Rory C Monahan ◽  
Rolf Fronczek ◽  
Jeroen Eikenboom ◽  
Huub A M Middelkoop ◽  
Liesbeth J J Beaart-van de Voorde ◽  
...  

Objective We aimed to evaluate all-cause and cause-specific mortality in patients with systemic lupus erythematosus (SLE) and neuropsychiatric (NP) symptoms in the Netherlands between 2007–2018. Methods Patients visiting the tertiary referral NPSLE clinic of the Leiden University Medical Center were included. NP symptoms were attributed to SLE requiring treatment (major NPSLE) or to other and mild causes (minor/non-NPSLE). Municipal registries were checked for current status (alive/deceased). Standardized mortality ratios (SMRs) and 95% confidence intervals (CI) were calculated using data from the Dutch population. Rate ratio (RR) and 95% CI were calculated using direct standardization to compare mortality between major NPSLE and minor/non-NPSLE. Results 351 patients were included and 149 patients were classified as major NPSLE (42.5%). Compared with the general population, mortality was increased in major NPSLE (SMR 5.0 (95% CI: 2.6–8.5)) and minor/non-NPSLE patients (SMR 3.7 (95% CI: 2.2–6.0)). Compared with minor/non-NPSLE, mortality was similar in major NPSLE patients (RR: 1.0 (95% CI: 0.5–2.0)). Cause-specific mortality rates demonstrated an increased risk of death due to infections in both groups, whereas death due to cardiovascular disease was only increased in minor/non-NPSLE patients. Conclusion Mortality was increased in both major NPSLE and minor/non-NPSLE patients in comparison with the general population. There was no difference in mortality between major NPSLE and minor/non-NPSLE patients.


2003 ◽  
Vol 21 (18) ◽  
pp. 3431-3439 ◽  
Author(s):  
Berthe M.P. Aleman ◽  
Alexandra W. van den Belt-Dusebout ◽  
Willem J. Klokman ◽  
Mars B. van’t Veer ◽  
Harry Bartelink ◽  
...  

Purpose: To assess long-term cause-specific mortality of young Hodgkin’s disease (HD) patients. Patients and Methods: The study population consisted of 1,261 patients treated for HD before age 41 between 1965 and 1987. Follow-up was complete until October 2000. For 95% of deaths, the cause was known. Long-term cause-specific mortality was compared with general population rates to assess relative risk (RR) and absolute excess risk (AER) of death. Results: After a median follow-up of 17.8 years, 534 patients had died (55% of HD). The RR of death from all causes other than HD was 6.8 times that of the general population, and still amounted to 5.1 after more than 30 years. RRs of death resulting from solid tumors (STs) and cardiovascular disease (CVD) were increased overall (RR = 6.6 and 6.3, respectively), but especially in patients treated before age 21 (RR = 14.8 and 13.6, respectively). When these patients grew older, this elevated mortality decreased. The overall AER of death from causes other than HD increased throughout follow-up. Patients receiving salvage chemotherapy had a significantly increased RR of death from STs, compared to patients receiving initial therapy only. Conclusion: The main cause of death among HD patients was lymphoma, but after 20 years, HD mortality was negligible. The RRs and AERs of death from second primary cancers (SCs) and CVDs continued to increase after 10 years. Even more than 30 years after diagnosis, HD patients experienced elevated risk of death from all causes other than HD. Increased risk of death from SCs and CVDs was found especially in patients treated before age 21, but these risks seemed to abate with age.


2021 ◽  
Vol 02 ◽  
Author(s):  
Ruqaiyyah Siddiqui ◽  
Mohammad Ridwane Mungroo ◽  
Mohamed Yehia Abouleish ◽  
Naveed A. Khan

Background and Objectives: The recently discovered coronavirus, SARS-CoV-2 has infected over 170 million people (as of 31th May 2021) since it was elucidated in December 2019. The number of SARS-CoV-2 cases and mortality rates vary from country to country, and unfortunately, the United Kingdom ranks in the top 5 countries with the most deaths as of 31th May 2021. Methods: A literature review was conducted during May 2021 to examine if factors such as gut microbiome, ethnic diversity, high cancer rates, obesity and alcohol consumption may have contributed to the higher number of cases and mortality due to SARS-CoV-2 in the UK. Results: The western diet is associated with a less diverse gut microbiome, as well as obesity, and contributes to the severity of SARS-CoV-2 infection. Moreover, people belonging to Black and South Asian ethnic groups in the UK have an increased risk of death due to SARS-CoV-2 infection. Given the high number of cancer patients in the UK, as well as excess consumption of alcohol, higher mortality rates were observed, most likely due to people possessing a less diverse gut microbiome and/or weakened immune system. Conclusion: Targeting the gut microbiome in developing potential therapeutics against SARS-COV-2 is of value, and further studies are needed to understand the specific role of the gut microbiome.


2019 ◽  
Vol 48 (8) ◽  
pp. 809-816
Author(s):  
Karoliina Karjalainen ◽  
Jari Haukka ◽  
Kristiina Kuussaari ◽  
Sanna Hautala ◽  
Pekka Hakkarainen

Aims: Understanding the mortality of drug users using multiple substances is helpful in preventing the harmful effects of polydrug use. We examined overall and cause-specific mortality and differences in mortality based on social background among people suspected of driving under the influence and testing positive for multiple substances (DUIMS) compared with the general Finnish population. Methods: Register data from 785 DUIMS during 2003–2006 were studied, with a reference population ( n = 25,381) drawn from the general Finnish population. The effect of DUIMS on all-cause and cause-specific mortality was estimated using a Poisson regression model. Results: DUIMS had an increased risk of death compared with the general population (MRR 5.3, 95% CI 4.2–6.6). The most common causes of death in DUIMS were poisonings (37.9%) and suicides (13.6%), whereas in the reference population these were cardiovascular diseases (30.8%) and cancer (26.6%). The cause-specific risk of death among DUIMS was higher in all observed causes of death, except for cancer. The effect of DUIMS on mortality was modified by age, employment status and marital status; DUIMS was associated with an elevated risk of death especially in younger age groups and in singles. Conclusions: DUIMS indicates higher mortality, and DUIMS’ profiles in causes of death differ from the general population. Elevated risk for, for instance, suicidal, accidental and violent death among those using multiple substances highlights the need to also pay attention to causes of death other than poisoning/overdose.


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