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Open accessJournal ArticleDOI: 10.1093/RHEUMATOLOGY/KEAA620

Estimation of the burden of shielding among a cross-section of patients attending rheumatology clinics with SLE-data from the BSR audit of systemic lupus erythematosus.

02 Mar 2021-Rheumatology (Oxford University Press)-Vol. 60, Iss: 3, pp 1474-1479
Abstract: OBJECTIVES We aimed to estimate what proportion of people with SLE attending UK rheumatology clinics would be categorized as being at high risk from coronavirus disease 2019 (COVID-19) and therefore asked to shield, and explore what implications this has for rheumatology clinical practice. METHODS We used data from the British Society for Rheumatology multicentre audit of SLE, which included a large, representative cross-sectional sample of patients attending UK Rheumatology clinics with SLE. We calculated who would receive shielding advice using the British Society for Rheumatology's risk stratification guidance and accompanying scoring grid, and assessed whether ethnicity and history of nephritis were over-represented in the shielding group. RESULTS The audit included 1003 patients from 51 centres across all 4 nations of the UK. Overall 344 (34.3%) patients had a shielding score ≥3 and would have been advised to shield. People with previous or current LN were 2.6 (1.9-3.4) times more likely to be in the shielding group than people with no previous LN (P < 0.001). Ethnicity was not evenly distributed between the groups (chi-squared P < 0.001). Compared with White people, people of Black ethnicity were 1.9 (1.3-2.8) and Asian 1.9 (1.3-2.7) times more likely to be in the shielding group. Increased risk persisted after controlling for LN. CONCLUSION Our study demonstrates the large number of people with SLE who are likely to be shielding. Implications for clinical practice include considering communication across language and cultural differences, and ways to conduct renal assessment including urinalysis, during telephone and video consultations for patients who are shielding.

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Open accessJournal ArticleDOI: 10.1093/RHEUMATOLOGY/KEAA855
Emily Peach1, Megan Rutter1, Peter Lanyon2, Matthew J. Grainge1  +5 moreInstitutions (3)
01 Apr 2021-Rheumatology
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 from 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 1 March 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%. A total of 1815 (1.1%) participants died during March and April 2020. The age-standardized 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 health-care services.

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Topics: Mortality rate (58%), Population (56%), Cohort study (53%) ... show more

17 Citations


Open accessJournal ArticleDOI: 10.1093/RAP/RKAA072
Melanie Sloan1, Caroline Gordon2, Rupert Harwood1, Elliott Lever3  +7 moreInstitutions (3)
Abstract: Objective The aim was to explore the self-reported impact of the COVID-19 pandemic on changes to care and behaviour in UK patients with systemic autoimmune rheumatic diseases, to help ensure that patient experiences are considered in future pandemic planning. Methods This was a longitudinal mixed methods study, with a cohort completing baseline surveys in March 2020 and follow-up surveys in June 2020 (n = 111), combined with thematic analysis of the LUPUS UK forum and participant interviews (n = 28). Results Cancellations of routine care and difficulties in accessing medical support contributed to some participants deteriorating physically, including reports of hospitalizations. The majority of participants reported that fear of COVID-19 and disruptions to their medical care had also adversely impacted their mental health. Feeling medically supported during the pandemic was correlated with multiple measures of mental health and perceptions of care, including the Warwick-Edinburgh mental well-being score (r = 0.44, P = 0.01). Five themes were identified: detrimental reduction in care; disparities in contact and communication (medical security vs abandonment sub-theme); perceived and actual endangerment; the perfect storm of reduced clinician ability to help and increased patient reticence to seek help; and identifying the patients most vulnerable to reduced medical care. Conclusion The diversion of resources away from chronic disease care was perceived by many participants to have caused adverse outcomes. Fear about increased vulnerability to COVID-19 was high, contributing to health-care-avoidant behaviours. This study also highlights the influence of clinician accessibility and patients feeling medically supported on multiple measures of physical and mental health.

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Topics: Health care (61%), Mental health (54%), Longitudinal study (50%)

6 Citations


Open accessJournal ArticleDOI: 10.1093/RAP/RKAB003
Melanie Sloan1, Caroline Gordon2, Elliott Lever3, Rupert Harwood1  +7 moreInstitutions (5)
Abstract: Objective: The shielding guidance in the UK for the clinically extremely vulnerable (CEV) commenced on 23 March 2020 in response to the coronavirus disease 2019 (COVID-19) pandemic The purpose of this study was to explore the impact of the pandemic and shielding on patients with lupus and related systemic autoimmune rheumatic diseases (SARDs) Methods: This was a mixed-methods cohort study (n = 111) including pre-lockdown baseline surveys (March 2020), follow-up surveys (June 2020) and in-depth interviews during July 2020 (n = 25) Results: Most participants had a high level of anxiety regarding their mortality risk from COVID-19 and supported the concept of shielding Shielding allocations and communications were perceived as inconsistently applied and delivered More than half of those not classified as CEV reported feeling abandoned, at increased risk and with no support Shielding communications increased feelings of being 'cared about', but also increased fear, and the 'vulnerable' labelling was perceived by some to damage social and self-identity More than 80% of those classified as CEV stated that the classification and subsequent communications had changed their social-mixing behaviour Despite many negative impacts of COVID-19 and shielding/lockdown being identified, including isolation, fear and reduced medical care, the quantitative data during the pandemic showed increases in most measures of wellbeing (which was low at both time points) from pre-lockdown, including reductions in the impact of fatigue and pain (P-values < 0 001) Conclusion: Shielding classifications and communications were, in general, viewed positively, although they were perceived as inconsistently delivered and anxiety-provoking by some participants More frequent positively framed communication and wellbeing support could benefit all SARD patients Slower-paced lockdown lifestyles might confer health/wellbeing benefits for some people with chronic diseases

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1 Citations


Open accessPosted ContentDOI: 10.1101/2020.10.09.20210237
Emily Peach1, Megan Rutter1, Peter Lanyon2, Matthew J. Grainge1  +5 moreInstitutions (2)
22 Nov 2020-medRxiv
Abstract: Objectives To 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. 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 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. 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. Key messages People 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.

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Topics: Population (57%), Mortality rate (57%), Cohort study (53%)

1 Citations


Open accessPosted ContentDOI: 10.1101/2021.08.17.21260846
Megan Rutter1, Megan Rutter2, Peter Lanyon, Matthew J. Grainge1  +8 moreInstitutions (4)
18 Aug 2021-medRxiv
Abstract: Objectives 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 to the general population. Methods We used Hospital Episode Statistics to identify all people alive 01 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-standardised infection rate was 1.54 (95% CI 1.50-1.59) times higher than in the general population. 713 (0.42%) people with RAIRD died with COVID-19 on their death certificate and the age-sex-standardised 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 to the general population. These increases were seen despite shielding policies. Key Messages People with RAIRD were at increased risk of COVID-19 infection during the first wave. Compared to the general population, they had over twice the risk of COVID-19-related death. These increased risks were seen despite shielding policies in place in England.

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Topics: Death certificate (64%), Mortality rate (60%), Population (58%)

References
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Open accessJournal ArticleDOI: 10.1093/FAMPRA/CMI113
01 Jun 2006-Family Practice
Abstract: BACKGROUND: Ethnic minority patients seem to be confronted with barriers when using health services. Yet, care providers are often oblivious to these barriers, although they may share to some extent the burden of responsibility for them. In order to enlighten care providers, as to the potential pitfalls that may exist, there is a need to explore the different factors in the creation of the barriers. OBJECTIVE: Therefore, the objective of this paper is to present an overview of the potential barriers and the factors, which may restrict ethnic minority patients from using health services, according to the literature available. METHODS: Articles published from 1990 to 2003 were identified by searching electronic databases and selected through titles and abstracts. The articles were included if deemed to be relevant to study health services use by ethnic minorities, i.e. the different factors in the creation of a barrier. RESULTS: There were 54 articles reviewed. They reported on studies carried out in different countries and among different ethnic minorities. Potential barriers occurred at three different levels: patient level, provider level and system level. The barriers at patient level were related to the patient characteristics: demographic variables, social structure variables, health beliefs and attitudes, personal enabling resources, community enabling resources, perceived illness and personal health practices. The barriers at provider level were related to the provider characteristics: skills and attitudes. The barriers at system level were related to the system characteristics: the organisation of the health care system. CONCLUSION: This review has the goal of raising awareness about the myriad of potential barriers, so that the problem of barriers to health care for different ethnic minorities becomes transparent. In conclusion, there are many different potential barriers of which some are tied to ethnic minorities. The barriers are all tied to the particular situation of the individual patient and subject to constant adjustment. In other words, generalizations should not be made.

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Topics: Health care (56%), Ethnic group (52%)

628 Citations


Open accessJournal ArticleDOI: 10.1093/RHEUMATOLOGY/KEX260
Frances Rees1, Frances Rees2, Michael Doherty1, Matthew J. Grainge1  +3 moreInstitutions (2)
01 Nov 2017-Rheumatology
Abstract: Objectives The aim was to review the worldwide incidence and prevalence of SLE and variation with age, sex, ethnicity and time. Methods A systematic search of MEDLINE and EMBASE search engines was carried out using Medical Subject Headings and keyword search terms for Systemic Lupus Erythematosus combined with incidence, prevalence and epidemiology in August 2013 and updated in September 2016. Author, journal, year of publication, country, region, case-finding method, study period, number of incident or prevalent cases, incidence (per 100 000 person-years) or prevalence (per 100 000 persons) and age, sex or ethnic group-specific incidence or prevalence were collected. Results The highest estimates of incidence and prevalence of SLE were in North America [23.2/100 000 person-years (95% CI: 23.4, 24.0) and 241/100 000 people (95% CI: 130, 352), respectively]. The lowest incidences of SLE were reported in Africa and Ukraine (0.3/100 000 person-years), and the lowest prevalence was in Northern Australia (0 cases in a sample of 847 people). Women were more frequently affected than men for every age and ethnic group. Incidence peaked in middle adulthood and occurred later for men. People of Black ethnicity had the highest incidence and prevalence of SLE, whereas those with White ethnicity had the lowest incidence and prevalence. There appeared to be an increasing trend of SLE prevalence with time. Conclusion There are worldwide differences in the incidence and prevalence of SLE that vary with sex, age, ethnicity and time. Further study of genetic and environmental risk factors may explain the reasons for these differences. More epidemiological studies in Africa are warranted.

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Topics: Incidence (epidemiology) (61%)

293 Citations


Open accessJournal ArticleDOI: 10.1002/ART.22683
Abstract: Objective To estimate the annual incidence of systemic lupus erythematosus (SLE) over a 10-year period in the UK, and to examine age-, sex-, and region-specific rates. Methods The study was based on the UK General Practice Research Database (GPRD), which covers ∼5% of the UK population. We estimated SLE incidence rates, during the period 1990–1999, among persons registered with practices contributing to the GPRD, representing >33 million person-years of observation. Results A total of 1,638 patients with incident SLE (1,374 females, 264 males) were identified. The age-standardized SLE incidence in the UK during the 1990s was 7.89 per 100,000 (95% confidence interval [95% CI] 7.46, 8.31) for females and 1.53 per 100,000 (95% CI 1.34, 1.71) for males (overall female-to-male ratio 5.2:1). Peak incidence occurred at age 50–54 years for females and 70–74 years for males. There was a small but insignificant increase of SLE incidence over the 10 years among females but not males. No clear association between latitude and SLE incidence was found, but regional variations existed, with age-standardized rates ranging from 3.56 per 100,000 (95% CI 3.00, 4.13) for the West Midlands to 7.62 per 100,000 (95% CI 5.59, 9.65) for Northern Ireland. Conclusion This study provides updated estimates of SLE incidence in the UK. Standard methodology throughout the study period and target population allowed for comparison of rates over time and across regions.

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Topics: Incidence (epidemiology) (56%), Population (53%)

128 Citations


Open accessJournal ArticleDOI: 10.1093/RHEUMATOLOGY/KEN050
01 May 2008-Rheumatology
Abstract: Objective. To assess whether patients with RA and SLE who are of South Asian origin have different beliefs about medicines in general, and about DMARDs in particular, compared with patients of White British/Irish origin. Methods. One hundred patients of South Asian origin (50 RA; 50 SLE) and 100 patients of White British/Irish origin (50 RA; 50 SLE) were recruited. Demographic and disease-related details and responses to the Beliefs about Medicines Questionnaire (BMQ), the SF-36 and the HAQ were collected. Results. Patients of South Asian origin had significantly higher General Overuse (GO), General Harm (GH) and Specific Concern (SC) scores compared with patients of White British/Irish origin. Forward stepwise multivariable regression analysis showed that ethnic origin was an independent predictor of the GO, GH and SC scores with patients of South Asian origin having higher scores in these three scales of the BMQ. Conclusion. RA and SLE patients of South Asian origin have very high levels of concern about DMARDs and are generally worried about prescribed medicines. This may have an impact on adherence in this group of patients and further work is needed to understand the reasons underlying these beliefs.

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Topics: Ethnic origin (53%)

100 Citations


Open accessJournal ArticleDOI: 10.1093/RHEUMATOLOGY/KEU412
Chee-Seng Yee1, Li Su1, Veronica Toescu1, Richard A. Hickman1  +4 moreInstitutions (1)
01 May 2015-Rheumatology
Abstract: Objective The aim of this study was to describe the outcomes and predictors for development of damage in a large inception cohort of SLE patients. Methods This was a prospective longitudinal study of a cohort of SLE patients. SLE patients were included if they were recruited within 3 years of achieving the fourth ACR criterion for SLE. Data were collected on disease activity, damage and treatment. Information on death was provided by the Office for National Statistics. The censoring date for analysis was 31 December 2010. A standardized mortality ratio was calculated. Poisson regression was used to determine the incidence rate for damage accrual. Multistate Markov modelling was used to determine predictors for development of damage. Results There were 382 patients (92.4% females, 51.6% Caucasian, 22% South Asian, 20.7% Afro-Caribbean) with 12 072 assessments and total follow-up of 2958 patient-years. There were 300 items of damage (in 143 patients) and 37 deaths. The overall standardized mortality ratio was 2.0 (95% CI 1.5, 2.8) and the most common causes of death were infection (37.8%), cardiovascular (27%) and malignancy (13.5%). The predictors for damage accrual were higher prior damage, older age at diagnosis, active disease, systemic corticosteroid exposure and CYC exposure. Patients were more likely to develop new damage earlier in their disease than later. Ethnicity was not predictive of damage accrual or death in this cohort. Conclusion SLE patients have premature mortality. Active disease, corticosteroid exposure and CYC exposure were independently associated with the development of damage. Damage accrual is more likely to occur in early disease.

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Topics: Cohort (58%), Standardized mortality ratio (57%), Prospective cohort study (56%) ... show more

63 Citations