SLE has a range of fluctuating symptoms affecting individuals and their ability to work. Although South Asian (SA) patients are at increased risk of developing SLE there is limited knowledge of the impact on employment for these patients in the UK. Understanding ethnicity and disease-specific issues are important to ensure patients are adequately supported at work. Semi-structured interviews were conducted with patients of SA origin to explore how SLE impacted on their employment. Thematic analysis was used to analyse the data which are reported following COREQ guidelines. Ten patients (8 female; 2 male) were recruited from three rheumatology centres in the UK and interviewed between November 2019 and March 2020. Patients were from Indian (n = 8) or Pakistani (n = 2) origin and worked in a range of employment sectors. Four themes emerged from the data: (1) Disease related factors; (2) Employment related factors; (3) Cultural and interpersonal factors impacting on work ability; (4) Recommendations for improvement. Patients’ ability to work was affected by variable work-related support from their hospital clinicians, low awareness of SLE and variable support from their employers, and cultural barriers in their communities that could affect levels of family support received. These findings highlight the need for additional support for SA patients with SLE in the workplace.
Objectives Patients with Systemic Lupus Erythematosus are known to have dysregulated immune responses and may have reduced response to vaccination against COVID-19 while being at risk of severe COVID-19 disease. The aim of this study was to identify whether vaccine responses were attenuated in SLE and to assess disease- and treatment-specific associations. Methods Patients with SLE were matched by age, sex and ethnic background to healthcare worker healthy controls (HC). Anti-SARS-CoV-2 spike glycoprotein antibodies were measured at 4–8 weeks following the second COVID-19 vaccine dose (either BNT162b2 or ChAdOx1 nCoV-19) using a CE-marked combined ELISA detecting IgG, IgA and IgM (IgGAM). Antibody levels were considered as a continuous variable and in tertiles and compared between SLE patients and HC and associations with medication, disease activity and serological parameters were determined. Results Antibody levels were lower in 43 SLE patients compared to 40 HC ( p < 0.001). There was no association between antibody levels and medication, lupus disease activity, vaccine type or prior COVID infection. Higher serum IgA, but not IgG or IgM, was associated with being in a higher anti-SARS-CoV-2 antibody level tertile (OR [95% CI] 1.820 [1.050, 3.156] p = 0.033). Similarly, higher lymphocyte count was also associated with being in a higher tertile of anti-SARS-CoV-2 (OR 3.330 [1.505, 7.366] p = 0.003) Conclusion Patients with SLE have lower antibody levels following 2 doses of COVID-19 vaccines compared to HC. In SLE lower lymphocyte counts and serum IgA levels are associated with lower antibody levels post vaccination, potentially identifying a subgroup of patients who may therefore be at increased risk of infection.
Objective A limited range of neuropsychiatric symptoms have been reported in systemic autoimmune rheumatic diseases (SARDs), with varied symptom prevalence. This study aimed to investigate a wider range of potential symptoms than previous studies, compare patient self-reports with clinician estimates, and explore barriers to symptom identification. Methods Mixed methods were used. Data from SARDs patients (n = 1853) were compared with controls (n = 463) and clinicians (n = 289). In-depth interviews (n = 113) were analysed thematically. Statistical tests compared means of survey items between: patients and controls, 8 different SARD groups, and clinician specialities. Results Self-reported lifetime prevalences of all 30 neuropsychiatric symptoms investigated (including cognitive, sensorimotor and psychiatric) were significantly higher in SARDs than controls. Validated instruments assessed 55% of SARDs patients as currently having depression and 57% anxiety. Barriers to identifying neuropsychiatric symptoms included: 1) limits to knowledge, guidelines, objective tests, and inter-specialty cooperation; 2) subjectivity, invisibility and believability of symptoms; and 3) under-eliciting, under-reporting and under-documenting. A lower proportion of clinicians (4%) reported never/rarely asking patients about mental health symptoms than the 74% of patients who reported never/rarely being asked in clinic (p< 0.001). Over 50% of SARDs patients had never/rarely reported their mental health symptoms to clinicians; a proportion under-estimated at < 10% by clinicians (p< 0.001). Conclusion Neuropsychiatric symptom self-reported prevalences are significantly higher in SARDs than controls, and greatly underestimated by most clinicians. Research relying on medical records and current guidelines is unlikely to accurately reflect patients’ experiences of neuropsychiatric symptoms. Improved inter-specialty communication and greater patient involvement is needed in SARD care and research.
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.
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