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Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Mandeep Ubhi ◽  
Shirish Dubey ◽  
John Reynolds ◽  
Caroline Gordon ◽  
Tochukwu Adizie ◽  
...  

Abstract Background/Aims  Systemic lupus erythematosus (SLE) affect patients from minority ethnic backgrounds, with many patients experiencing symptoms that affect their daily lives despite receiving long-term controller medication. Work is a large part of most people’s lives, yet little has been explored into how people from minority ethnic backgrounds cope at work whilst living with SLE. We conducted a study to understand the impact of SLE on working lives of South Asian patients. The aim was to identify and develop support mechanisms that could assist them with remaining at work. Methods  Semi-structured interviews were conducted with ten patients of South Asian origin with SLE to explore their work experiences. Patients were recruited from three rheumatology centres in the West Midlands, UK and were interviewed between November 2019 and March 2020. Interviews were audio-recorded and typed by an independent transcribing company. Returned transcripts were analysed using thematic analysis and QSR NVivo 12 software was used to organise and manage the data. Results  The majority (n = 8) of patients were female. Eight patients were from an Indian background, and two were from a Pakistani background. Half of all patients were educated to degree level. The age range of patients was 23 - 58 years old (S.D = 10.79), and disease duration varied between 3 months-33 years (S.D = 9.52). All patients had permanent jobs; six were in full-time employment, and four were in part-time employment. Four main themes emerged from the data: 1) Disease related factors; impacting work ability; 2) Employment related factors; impacting work ability; 3) Personal and cultural related factors; impacting work ability; 4) Recommendations for improvement were made by patients. Conclusion  In this novel study we highlight patients’ experiences of being at work. This study reports low awareness of SLE and mixed support in the workplace. Patients discussed work to varying degrees with their clinicians and needed further information for employers that was not available nor provided by their clinicians. The study reports cultural barriers in understanding SLE that could lead to lack of family support to remain in employment. Moreover, recommendations made in this study require further investigation and could be used by clinicians and Lupus UK to support patients of South Asian origin at work. Disclosure  M. Ubhi: None. S. Dubey: None. J. Reynolds: None. C. Gordon: None. T. Adizie: None. T. Sheeran: None. K. Allen: None. R. Jordan: None. S. Sadhra: None. J. Adams: None. R. Daji: None. K. Kumar: None.


2021 ◽  
Author(s):  
Prajjval Singh ◽  
Anshika Shrivastava ◽  
Gazi Nurun Nahar Sultana ◽  
Nargis Khanam ◽  
Abhishek Pathak ◽  
...  

Abstract With the growing evidence on the variable human susceptibility against COVID-19, it is evident that some genetic loci modulate the severity of the infection. Recent studies have identified several loci associated with greater severity. More recently, a study has identified a 50kb segment introgressed from Neanderthal adding a risk for COVID-19, and this trait is present among 16% and 50% people of European and South Asian origin respectively. Contrary to this finding, our studies on ACE2 identified a haplotype present among 20% and 60% of European and South Asian populations respectively, which appears to be responsible for the low case fatality ratio among South Asian populations. This result was also consistent with the realtime infection rate and case fatality ratio among various states of India. We readdressed this issue using both of the contrasting datasets and compared them with the realtime infection rates and case fatality ratio in India. We found out that the polymorphism present in the 50kb introgressed segment (rs10490770) did not show any significant correlation with the realtime infection and case fatality ratio in India.


2021 ◽  
Author(s):  
Prajjval Pratap Singh ◽  
Anshika Shrivastava ◽  
Gazi Nurun Nahar Sultana ◽  
Nargis Khanam ◽  
Abhishek Pathak ◽  
...  

Abstract With the growing evidence on the variable human susceptibility against COVID-19, it is clear that there are some genetic loci modulating the severity. Recent studies have identified several loci associated with the higher severity. More recently, a study has identified 50kb segment introgressed from Neanderthal adding risk for COVID-19, and is present among 16% and 50% people of European and South Asian origin respectively. Contrary to that, our studies on ACE2 identified a haplotype present among 20% and 60% of European and South Asian populations respectively, was probably responsible for the low case fatality ratio among South Asian populations. This result was also consistent with the realtime infection rate and case fatality ratio among various states of India. We readdressed this issue using both of the contrasting datasets and compared them with the realtime infection rates and case fatality ratio in India. We found out that that the polymorphism present in 50kb introgressed segment (rs10490770) did not show any significant correlation with the realtime infection and case fatality ratio in India.With the growing evidence on the variable human susceptibility against COVID-19, it is clear that there are some genetic loci modulating the severity. Recent studies have identified several loci associated with the higher severity. More recently, a study has identified 50kb segment introgressed from Neanderthal adding risk for COVID-19, and is present among 16% and 50% people of European and South Asian origin respectively. Contrary to that, our studies on ACE2 identified a haplotype present among 20% and 60% of European and South Asian populations respectively, was probably responsible for the low case fatality ratio among South Asian populations. This result was also consistent with the realtime infection rate and case fatality ratio among various states of India. We readdressed this issue using both of the contrasting datasets and compared them with the realtime infection rates and case fatality ratio in India. We found out that that the polymorphism present in 50kb introgressed segment (rs10490770) did not show any significant correlation with the realtime infection and case fatality ratio in India.


2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Kanta Kumar ◽  
Suvrat Arya ◽  
Peter Nightingale ◽  
Tom Sheeran ◽  
Amita Aggarwal

Abstract Background South Asians have a higher risk of cardiovascular disease (CVD). Rheumatoid arthritis (RA) increases the risk of premature atherosclerosis. We investigated whether there was a substantial difference in the level of CVD risk knowledge among patients of South Asian origin with RA in India and in the UK. Methods In this cross-sectional survey, patients of South Asian origin with RA from India and the UK were recruited from secondary care settings. Data were collected via Heart Disease Fact Questionnaire-Rheumatoid Arthritis (HDFQ-RA), a validated self-completion questionnaire. The HDFQ-RA was translated into Hindi and piloted among patients from South Asian background before use. Additionally, clinical and demographic data was collected. Results Among 118 patients from each country, 84% were female and they had similar age, education level, employment status and co-morbidities. Patients from India had longer disease duration (5.5 years versus 4.1 years (p = 0.012) whereas those from the UK had higher disease activity score (4.0 + 0.8 versus 3.1 + 0.7, p < 0.01). Regarding modifiable risk factors for CVD only 51.2% from India and 51.3% in the UK were aware of them. However, awareness of the link between RA and increased risk of CVD was even more limited (32.8% in India and 34.4% in UK). Conclusion Patients of South Asians origin with RA from both countries had limited knowledge about CVD risk. There is a need to educate them about CVD risk during consultation, as this will result in better outcomes.


2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Naheed Dosani ◽  
Ravi Bhargava ◽  
Amit Arya ◽  
Celeste Pang ◽  
Pavinder Tut ◽  
...  

Abstract Background Patients often view “palliative care” (PC) as an approach that is synonymous with end-of-life and death, leading to shock and fear. Differing cultural and social norms and religious affiliations greatly determine perception of PC among diverse populations. Methods This prospective observational study aimed to explore perceptions of PC among South Asian community members at one Canadian site. Patients who identified themselves as being of South Asian origin were consented and enrolled at a PC Clinic at a community hospital in Brampton, Ontario serving a large South Asian population. Participants filled out an 18-question survey created for the study and responded to a semi-structured interview consisting of 8 questions that further probed their perceptions of PC. Survey responses and semi-structured interviews content were analyzed by four authors who reached consensus on key exploratory findings. Results Thirty-four participants of South Asian origin were recruited (61.8% males), and they were distributed by their age group as follows: [(30–49) - 18%; (50–64) – 21%; (65–79) - 41%; (≥ 80) – 21%]. Five main exploratory findings emerged: (i) differing attitudes towards talking about death; (ii) the key role of family in providing care; (iii) a significant lack of prior knowledge of PC; (iv) a common emphasis on the importance of alleviating suffering and pain to maintain comfort; and (v) that cultural values, faith, or spiritual belief do not pose a necessary challenge to acceptance of PC services. Conclusions Observations from this study provide a source of reference to understand the key findings and variability in perceptions of palliative care in South Asian communities. Culturally competent interventions based on trends observed in this study could assist Palliative Physicians in delivering personalized care to South Asian populations.


2020 ◽  
Vol 13 (3) ◽  
Author(s):  
Triya Chakravorty

The United Kingdom National Health Service (NHS) staff and students have been working tirelessly throughout the pandemic in a multitude of ways, including caring for patients, volunteering their time, or being involved in research and education. People of Asian origin make up 29.7% of the NHS medical workforce1. In recognition of South Asian Heritage Month, we asked our readers to nominate health care workers of South Asian origin who have demonstrated their tenacity, innovation, and excellence in recent months.


Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Kanta Kumar ◽  
Suvrat Arya ◽  
Peter Nightingale ◽  
Tom Sheeran ◽  
Amita Aggarwal

Abstract Background South Asians have a higher risk of cardiovascular disease (CVD). Rheumatoid arthritis (RA) increases the risk of premature atherosclerosis. Therefore, we compared the level of CVD risk knowledge among patients of South Asian origin with RA in India and in the UK. Methods In this cross-sectional survey, patients of South Asian origin with RA from India and the UK were recruited from secondary care settings. Data were collected via Heart Disease Fact Questionnaire-Rheumatoid Arthritis (HDFQ-RA), a validated self-completion questionnaire. The HDFQ-RA was translated into Hindi and piloted among patients from South Asian background before use. Additionally, clinical and demographic data was collected. Results Among 118 patients from each country, 84% were female and they had similar age, education level, employment status and co-morbidities. Patients from India had longer disease duration (5.5 years versus 4.1 years (p = 0.012) whereas those from the UK had higher disease activity score (4.0 + 0.8 versus 3.1 + 0.7, p &lt; 0.01). Regarding modifiable risk factors for CVD only 44.6% from India and 45.4% in the UK were aware of them (p=ns). However, awareness of the link between RA and increased risk of CVD was even more limited (38.1% in India and 40.7% in UK (p=ns). Conclusion Patients of South Asians origin with RA from both countries had limited knowledge about CVD risk. There is a need to educate them about CVD risk during consultation, as this will result in better outcomes. Disclosures K. Kumar None. S. Arya None. P. Nightingale None. T. Sheeran None. A. Aggarwal None.


Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Kanta Kumar ◽  
Caroline Bradbury-Jones ◽  
Christopher J Armitage ◽  
Sarah Peters ◽  
Sabrina Raizada ◽  
...  

Abstract Background There is poor medication adherence in patients of South Asian origin with rheumatoid arthritis (RA). There are limited interventions to improve patient engagement. The objective of this study was to explore how patients of South Asian origin make sense of their disease after receiving written leaflets compared to online information or visualising real-time Doppler Ultrasound (DUS) images of their inflamed joints. Methods Patients of South Asian origin with RA were recruited from two NHS hospitals in the West Midlands, UK. In-depth semi-structured interviews were undertaken following exposure to vignettes designed to elicit patients’ perspectives on: (1) written leaflets, (2) online information to complement face-to-face interaction with healthcare professionals, and (3) DUS during the early stages of the disease journey. Data were analysed thematically until data saturation was reached in twenty individuals. Results The responses to vignette scenarios were described by patients: [1] perspectives on written leaflets at the early stages of the disease journey, [2] perspectives of online information to compliment face-to-face interaction with healthcare professionals, [3] perspective of DUS during the early stages of the disease journey. Overall, patients found real-time DUS more valuable in understanding RA and RA medications compared to other methods. Patients reported DUS reduced anxiety and helped address misconceptions about long-term disease and its ability to be controlled. Conclusion We have developed new understanding regarding the educational utility of a DUS session in patients of South Asian origin and how these sessions can be optimised to increase patient engagement and medication adherence. Disclosures K. Kumar None. C. Bradbury-Jones None. C. Armitage None. S. Peters None. S. Raizada None. P. Wong None.


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