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1.
Lupus ; 30(9): 1492-1501, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34092136

RESUMO

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.


Assuntos
Emprego/estatística & dados numéricos , Lúpus Eritematoso Sistêmico , Adulto , Feminino , Humanos , Índia/etnologia , Lúpus Eritematoso Sistêmico/epidemiologia , Lúpus Eritematoso Sistêmico/etnologia , Masculino , Pessoa de Meia-Idade , Paquistão/etnologia , Reino Unido/epidemiologia , Adulto Jovem
3.
Rheumatol Adv Pract ; 7(1): rkad009, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36751643

RESUMO

Objective: The aim was to evaluate the impact of the coronavirus disease 2019 (COVID-19) pandemic and stringent social isolation measures on patients with rheumatic disease (RD) from the beginning of the pandemic (April 2020). Methods: In this UK-based single-centre, prospective, observational cohort study, all RD follow-up patients at our centre were invited by SMS text message in April 2020 to participate in the study. Participants completed questionnaires at four time points between April 2020 and December 2021. We collected demographics, clinically extremely vulnerable (CEV) status, short form 12 mental (MCS) and physical health component scores (PCS) for health-related quality of life, vaccination status, COVID-19 infection rates and incidence of long COVID. Results: We enrolled 1605 patients (female, 69.0%; CEV, 46.5%); 906 of 1605 (56.4%) completed linked responses to our final questionnaire. MCS improved (+0.6, P < 0.05), whereas PCS scores deteriorated (-1.4, P < 0.001) between April 2020 and December 2021. CEV patients had worse mental and physical health scores than non-CEV patients at entry (PCS, 36.7 and 39.3, respectively, P < 0.001; MCS, 40.9 and 43.0, respectively, P < 0.001) and at each time point throughout the study; both mental and physical health outcomes were worse in CEV compared with non-CEV patients (P < 0.001 and P = 0.004, respectively). At study close, 148 of 906 (16.3%) reported COVID infection, with no difference in infection, vaccination or long COVID rates between CEV and non-CEV patients. Conclusions: Mental and physical health in RD patients has changed throughout the pandemic; outcomes for both metrics of health were worse in CEV patients, although there were no differences in infection rates between the groups. These data might assist the understanding and planning of future health-care policy and social restrictions in RD patients. Trial registration: ClinicalTrials.gov, www.clinicaltrials.gov, NCT04542031.

4.
Cureus ; 14(12): e32310, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36628005

RESUMO

INTRODUCTION: Giant cell arteritis (GCA) is the most common type of large vessel vasculitis. The diagnosis of GCA is often challenging and there is a difficult balance of over- and underinvestigation. There have been several proposed scoring systems to help clinicians risk stratify patients who may present with suspected GCA. METHODS: A retrospective cohort study was performed using electronic medical records of patients referred for a temporal artery biopsy (TAB) and temporal artery ultrasound scan (USS) for suspected GCA. All TABs performed at the Royal Wolverhampton NHS Trust between June 2014 and June 2018 and all USS procedures performed between January 2015 and January 2019 were analysed. Patients who undergo a USS for suspected GCA at our centre routinely have scanned bilateral temporal and axillary arteries. Patients were excluded if they already had a previous diagnosis of GCA (and the clinical question was suspected flare), or if there was insufficient information available. RESULTS: The total number of patients who underwent a confirmatory diagnostic test (either TAB or USS) for suspected GCA was 187. Thirteen of these patients met the exclusion criteria, the remaining 174 patients were included for analysis. A total of 126 of 174 patients underwent a TAB and 63 of 174 had a USS performed; 15 of 174 who had both these were included in the USS cohort because for all these patients, the ultrasound was the first diagnostic test performed. Our results appear to closely mirror the original multi-centre results with regard to the prediction of biopsy-positive GCA, with the centiles closely following those in the inception cohort. Also, 0% of the 'low' risk probability biopsy cohort were misclassified; none had a positive biopsy. However, 8% of the low-risk-probability ultrasound cohort were misclassified, as two had a positive ultrasound. CONCLUSION:  Our study highlights that a probability score for GCA derived from a large multi-centre cohort of patients who were biopsy positive predicts ultrasound positivity with similar accuracy. Our work reveals that scoring systems are not infallible but can be helpful in guiding clinical decision making.

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