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  • 1
    Online Resource
    Online Resource
    Clinical and laboratory characteristics in juvenile-onset systemic lupus erythematosus across age groups
    SAGE Publications ; 2020
    In:  Lupus Vol. 29, No. 5 ( 2020-04), p. 474-481
    Details
    In: Lupus, SAGE Publications, Vol. 29, No. 5 ( 2020-04), p. 474-481
    Abstract: Systemic lupus erythematous (SLE) is a systemic autoimmune/inflammatory condition. Approximately 15–20% of patients develop symptoms before their 18th birthday and are diagnosed with juvenile-onset SLE (JSLE). Gender distribution, clinical presentation, disease courses and outcomes vary significantly between JSLE patients and individuals with adult-onset SLE. This study aimed to identify age-specific clinical and/or serological patterns in JSLE patients enrolled to the UK JSLE Cohort Study. Methods Patient records were accessed and grouped based on age at disease-onset: pre-pubertal (≤7 years), peri-pubertal (8–13 years) and adolescent (14–18 years). The presence of American College of Rheumatology (ACR) classification criteria, laboratory results, disease activity [British Isles Lupus Assessment Group (BILAG) and Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2 K) scores] and damage [Systemic Lupus International Collaborating Clinics (SLICC) damage index] were evaluated at diagnosis and last follow up. Results A total of 418 JSLE patients were included in this study: 43 (10.3%) with pre-pubertal disease onset; 240 (57.4%) with peri-pubertal onset and 135 (32.3%) were diagnosed during adolescence. At diagnosis, adolescent JSLE patients presented with a higher number of ACR criteria when compared with pre-pubertal and peri-pubertal patients [pBILAG2004 scores: 9(4–20] vs. 7(3–13] vs. 7(3–14], respectively, p = 0.015] with increased activity in the following BILAG domains: mucocutaneous ( p = 0.025), musculoskeletal ( p = 0.029), renal ( p = 0.027) and cardiorespiratory ( p = 0.001). Furthermore, adolescent JSLE patients were more frequently ANA-positive ( p = 0.034) and exhibited higher anti-dsDNA titres ( p = 0.001). Pre-pubertal individuals less frequently presented with leukopenia ( p = 0.002), thrombocytopenia ( p = 0.004) or low complement ( p = 0.002) when compared with other age groups. No differences were identified in disease activity (pBILAG2004 score), damage (SLICC damage index) and the number of ACR criteria fulfilled at last follow up. Conclusions Disease presentations and laboratory findings vary significantly between age groups within a national cohort of JSLE patients. Patients diagnosed during adolescence exhibit greater disease activity and “classic” autoantibody, immune cell and complement patterns when compared with younger patients. This supports the hypothesis that pathomechanisms may vary between patient age groups.
    Type of Medium: Online Resource
    ISSN: 0961-2033 , 1477-0962
    URL: Article
    DOI: 10.1177/0961203320909156
    RVK:
    XA 10000
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2020
    detail.hit.zdb_id: 2008035-9
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  • 2
    Online Resource
    Online Resource
    Predictors of access to care in juvenile systemic lupus erythematosus: evidence from the UK JSLE Cohort Study
    Oxford University Press (OUP) ; 2014
    In:  Rheumatology Vol. 53, No. 3 ( 2014-03-01), p. 557-561
    Details
    In: Rheumatology, Oxford University Press (OUP), Vol. 53, No. 3 ( 2014-03-01), p. 557-561
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/ket402
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2014
    detail.hit.zdb_id: 1474143-X
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  • 3
    Online Resource
    Online Resource
    Adding to complexity: comorbidity in paediatric rheumatic disease
    Oxford University Press (OUP) ; 2013
    In:  Rheumatology Vol. 52, No. 1 ( 2013-01-01), p. 22-33
    Details
    In: Rheumatology, Oxford University Press (OUP), Vol. 52, No. 1 ( 2013-01-01), p. 22-33
    Type of Medium: Online Resource
    ISSN: 1462-0324 , 1462-0332
    URL: Article
    DOI: 10.1093/rheumatology/kes256
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2013
    detail.hit.zdb_id: 1474143-X
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  • 4
    Online Resource
    Online Resource
    Improving communication of the concept of 'treat-to target' in childhood lupus: a public and patient (PPI) engagement project involving children and young people
    Springer Science and Business Media LLC ; 2022
    In:  BMC Rheumatology Vol. 6, No. 1 ( 2022-10-15)
    Details
    In: BMC Rheumatology, Springer Science and Business Media LLC, Vol. 6, No. 1 ( 2022-10-15)
    Abstract: A treat-to-target (T2T) approach, where treatment is escalated until a specific target is achieved, and re-escalated if the target is lost, has been proposed as a strategy to improve Childhood Systemic Lupus Erythematosus (cSLE) outcomes. Previous studies involving children and young people (CYP) have identified that the concept of T2T can be difficult to understand by CYP and their families. We aimed to explore the views of CYP participating in existing public and patient involvement (PPI) groups in relation to a proposed animation that is being developed to explain the concept of T2T to CYP who will be eligible for a future cSLE T2T trial. Methods An illustrated animation storyboard was developed on PowerPoint, to be used alongside a contemporaneous voiceover to simulate the animation for CYP participating in three existing CYP PPI groups (GenerationR, Lupus UK, and YOUR RHEUM). Mixed methods were used to generate CYP feedback on the resource, including on-line surveys and qualitative topic-guided discussion, noting CYP suggestions for improvement. Changes were made iteratively to the resources. Pre/post workshop questionnaires to assess the impact of the resource on their understanding of T2T were completed anonymously. Results 40 CYP were consulted; 16/40 (40%) from GenerationR (median age 15-years [IQR 12–15]), 12/40 (30%) from Lupus UK (median age 27-years [IQR 22–30] ), and 12/40 (30%) from YOUR RHEUM (median age 17-years [IQR 16–21]). 62% of respondents had an underlying rheumatic condition. Pre-workshop median participant understanding of T2T was 2/10 [IQR 1–4] , on a 1–10 scale (1 = “no understanding at all”, 10 = “completely confident in my understanding”). After viewing the resource, participant understanding improved to a median of 9/10 [IQR 8–10], p   〈  0.0001). Overall, participants felt that the animation greatly improved their understanding of the concept of T2T, making several suggestions for improvement. Conclusion Involvement of CYP in research is crucial to help improve the design/delivery of studies, ensuring relevance to CYP and their families. This manuscript demonstrates the involvement of CYP in the development of an animation that will be integral to a future clinical trial, helping to describe the T2T approach in a comprehensible way to eligible CYP and their families, supporting study recruitment.
    Type of Medium: Online Resource
    ISSN: 2520-1026
    URL: Article
    DOI: 10.1186/s41927-022-00300-z
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2918121-5
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  • 5
    Online Resource
    Online Resource
    Growing international evidence for urinary biomarker panels identifying lupus nephritis in children – verification within the South African Paediatric Lupus Cohort
    SAGE Publications ; 2018
    In:  Lupus Vol. 27, No. 14 ( 2018-12), p. 2190-2199
    Details
    In: Lupus, SAGE Publications, Vol. 27, No. 14 ( 2018-12), p. 2190-2199
    Abstract: A urinary biomarker panel including alpha-1-acid-glycoprotein (AGP), lipocalin-like-prostaglandin-D-synthase (LPGDS), transferrin and ceruloplasmin demonstrates an ‘excellent’ ability for identifying active lupus nephritis in UK/US children. This study aimed to assess whether this panel identifies active lupus nephritis within the South African Paediatric Lupus Cohort. Methods Juvenile-onset-systemic lupus erythematosus (JSLE) patients aged  〈  19 years at diagnosis and healthy controls were recruited. Patients were categorized as having active lupus nephritis (renal BILAG score; A/B and previous histological confirmation) or inactive lupus nephritis (renal BILAG score: D/E). Urinary biomarkers were quantified by ELISA. Mann–Whitney U-test compared biomarker levels between groups. Binary logistic regression and receiver operating curve analysis assessed biomarker combinations. Results Twenty-three juvenile-onset-systemic lupus erythematosus patients were recruited with a median age of 13.5 years (interquartile range (IQR) 12.7–14.9) and disease duration of 2.6 years (IQR 1.8–4.0). Eighteen healthy controls had a median age of 11.0 years (IQR 10.0–12.0). AGP, LPGDS, transferrin, ceruloplasmin and VCAM-1 were significantly higher in active than in inactive lupus nephritis patients (corrected p-values, all p c   〈  0.05), with no difference between inactive lupus nephritis patients and healthy controls (all p c  = 1.0). The optimal biomarker combination included AGP, ceruloplasmin, LPGDS and transferrin (area under the curve = 1.0). Conclusions A urinary biomarker panel comprising AGP, ceruloplasmin, LPGDS and transferrin previously validated within UK/US cohorts also performed excellently within a racially distinct South African cohort which displayed more severe lupus nephritis.
    Type of Medium: Online Resource
    ISSN: 0961-2033 , 1477-0962
    URL: Article
    DOI: 10.1177/0961203318808376
    RVK:
    XA 10000
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2018
    detail.hit.zdb_id: 2008035-9
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  • 6
    Online Resource
    Online Resource
    The importance of children and young person involvement in scoping the need for a paediatric glucocorticoid-associated patient reported outcome measure
    Springer Science and Business Media LLC ; 2022
    In:  BMC Rheumatology Vol. 6, No. 1 ( 2022-10-15)
    Details
    In: BMC Rheumatology, Springer Science and Business Media LLC, Vol. 6, No. 1 ( 2022-10-15)
    Abstract: For many children and young people (CYP) with paediatric rheumatic conditions, glucocorticoid medications and their associated side-effects have a substantial impact on disease experience. Whilst there are physician-rated measures of glucocorticoid toxicity, no parallel patient reported measure has been developed to date for CYP with rheumatic disease. This manuscript describes a series of public patient involvement (PPI) events to inform the development of a future paediatric glucocorticoid-associated patient reported outcome measure (PROM). Methods One large group PPI event was advertised to CYP with experience of glucocorticoid medication use and their parents through clinicians, charities and existing PPI groups. This featured education on the team’s research into glucocorticoid medication and interactive polls/structured discussion to help participants share their experiences. Further engagement was sought for PPI group work to co-develop future glucocorticoid studies, including development of a glucocorticoid associated PROM. Quantitative and qualitative feedback was collected from online questionnaires. The initiative was held virtually due to the Covid-19 pandemic. Results Nine families (n = 15) including 6 CYP joined the large group PPI event. Online pre-attendance and post-attendance questionnaires showed improvement in mean self-reported confidence [1 = not at all confident, 5 = very confident] in the following: what steroid medications are (pre = 3.9, post = 4.8), steroid side effects (pre = 3.8, post = 4.6), patient-reported outcome measures (pre = 2.0, post = 4.5), available research on steroids (pre = 2.2, post = 3.5). Five families (n = 7) were involved in a monthly PPI group who worked alongside the research team to identify priorities in glucocorticoid research, produce age-appropriate study materials, identify barriers to study participation (e.g. accessibility & convenience) and recommend appropriate modalities for dissemination. The participants found discussing shared experiences and learning about research to be the most enjoyable aspects of the initiative. Conclusions This PPI initiative provided a valuable forum for families, including young children, to share their perspectives. Here, the authors explore the effective use of PPI in a virtual setting and provide a unique case study for the involvement of CYP in PROM development. The monthly PPI group also identified a need for the development of a new PROM related to glucocorticoid medication use and provided unique insights into how such a study could be structured.
    Type of Medium: Online Resource
    ISSN: 2520-1026
    URL: Article
    DOI: 10.1186/s41927-022-00312-9
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2918121-5
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  • 7
    Online Resource
    Online Resource
    Do classic blood biomarkers of JSLE identify active lupus nephritis? Evidence from the UK JSLE Cohort Study
    SAGE Publications ; 2017
    In:  Lupus Vol. 26, No. 11 ( 2017-10), p. 1212-1217
    Details
    In: Lupus, SAGE Publications, Vol. 26, No. 11 ( 2017-10), p. 1212-1217
    Abstract: Lupus nephritis (LN) affects up to 80% of juvenile-onset systemic lupus erythematosus (JSLE) patients. The value of commonly available biomarkers, such as anti-dsDNA antibodies, complement (C3/C4), ESR and full blood count parameters in the identification of active LN remains uncertain. Methods Participants from the UK JSLE Cohort Study, aged 〈 16 years at diagnosis, were categorized as having active or inactive LN according to the renal domain of the British Isles Lupus Assessment Group score. Classic biomarkers: anti-dsDNA, C3, C4, ESR, CRP, haemoglobin, total white cells, neutrophils, lymphocytes, platelets and immunoglobulins were assessed for their ability to identify active LN using binary logistic regression modeling, with stepAIC function applied to select a final model. Receiver-operating curve analysis was used to assess diagnostic accuracy. Results A total of 370 patients were recruited; 191 (52%) had active LN and 179 (48%) had inactive LN. Binary logistic regression modeling demonstrated a combination of ESR, C3, white cell count, neutrophils, lymphocytes and IgG to be best for the identification of active LN (area under the curve 0.724). Conclusions At best, combining common classic blood biomarkers of lupus activity using multivariate analysis provides a ‘fair’ ability to identify active LN. Urine biomarkers were not included in these analyses. These results add to the concern that classic blood biomarkers are limited in monitoring discrete JSLE manifestations such as LN.
    Type of Medium: Online Resource
    ISSN: 0961-2033 , 1477-0962
    URL: Article
    DOI: 10.1177/0961203317702253
    RVK:
    XA 10000
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2017
    detail.hit.zdb_id: 2008035-9
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  • 8
    Online Resource
    Online Resource
    Clinical predictors of active LN development in children – evidence from the UK JSLE Cohort Study
    SAGE Publications ; 2018
    In:  Lupus Vol. 27, No. 13 ( 2018-11), p. 2020-2028
    Details
    In: Lupus, SAGE Publications, Vol. 27, No. 13 ( 2018-11), p. 2020-2028
    Abstract: Juvenile-onset systemic lupus erythematosus (JSLE) patients may develop lupus nephritis (LN) during their initial presentation, or later in their disease. This study aimed to assess whether clinical/demographic factors characterize patients with LN within the United Kingdom JSLE Cohort Study, and whether such factors predict subsequent LN development. Methods Univariate logistic regression modelling compared clinical/demographic factors in patients with and without LN at baseline. For those who subsequently developed LN, Cox proportional-hazard modelling was used to test the association between such factors and time to LN development. Covariates with p  〈  0.2 univariately were included within a multiple-regression model. Results A total of 121/331 (37%) patients presented with active LN at baseline, with first American College of Rheumatology (ACR) score ( p  〈  2.0 × 10 –16 ), severe hypertension ( p = 0.0006), proteinuria ( p  〈  2.0 × 10 –16 ), creatinine ( p = 1.0 × 10 –16 ), erythrocyte sedimentation rate ( p = 1.0 × 10 –16 ), neutrophils ( p  〈  2.0 × 10 –16 ), complement 3 (C3) ( p = 4.0 × 10 –16 ) and ethnicity ( p = 3.0 × 10 –13 ) differing between those with and without LN. Of the 210 individuals without active LN at baseline, 13 patients had a single visit and were excluded from further analysis. Thirty-four of 197 (17%) developed LN after a median of 2.04 years (interquartile range, 0.8–3.7), with higher ACR scores ( p = 0.014 , hazard ratio (HR) = 1.45, 95% confidence interval (CI) = 1.08–1.95) and lower C3 levels ( p = 0.0082 , HR = 0.27, 95% CI = 0.10–0.68) demonstrated as predictors of subsequent LN. Conclusions Clinical and demographic factors can help to characterize patients at increased risk of LN.
    Type of Medium: Online Resource
    ISSN: 0961-2033 , 1477-0962
    URL: Article
    DOI: 10.1177/0961203318801526
    RVK:
    XA 10000
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2018
    detail.hit.zdb_id: 2008035-9
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  • 9
    Online Resource
    Online Resource
    Empagliflozin in patients admitted to hospital with COVID-19 (RECOVERY): a randomised, controlled, open-label, platform trial
    Elsevier BV ; 2023
    In:  The Lancet Diabetes & Endocrinology Vol. 11, No. 12 ( 2023-12), p. 905-914
    Details
    In: The Lancet Diabetes & Endocrinology, Elsevier BV, Vol. 11, No. 12 ( 2023-12), p. 905-914
    Type of Medium: Online Resource
    ISSN: 2213-8587
    URL: Article
    DOI: 10.1016/S2213-8587(23)00253-X
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2023
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  • 10
    Online Resource
    Online Resource
    Death following pulmonary complications of surgery before and during the SARS-CoV-2 pandemic
    Oxford University Press (OUP) ; 2021
    In:  British Journal of Surgery Vol. 108, No. 12 ( 2021-12-01), p. 1448-1464
    Details
    In: British Journal of Surgery, Oxford University Press (OUP), Vol. 108, No. 12 ( 2021-12-01), p. 1448-1464
    Abstract: This study aimed to determine the impact of pulmonary complications on death after surgery both before and during the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic. Methods This was a patient-level, comparative analysis of two, international prospective cohort studies: one before the pandemic (January–October 2019) and the second during the SARS-CoV-2 pandemic (local emergence of COVID-19 up to 19 April 2020). Both included patients undergoing elective resection of an intra-abdominal cancer with curative intent across five surgical oncology disciplines. Patient selection and rates of 30-day postoperative pulmonary complications were compared. The primary outcome was 30-day postoperative mortality. Mediation analysis using a natural-effects model was used to estimate the proportion of deaths during the pandemic attributable to SARS-CoV-2 infection. Results This study included 7402 patients from 50 countries; 3031 (40.9 per cent) underwent surgery before and 4371 (59.1 per cent) during the pandemic. Overall, 4.3 per cent (187 of 4371) developed postoperative SARS-CoV-2 in the pandemic cohort. The pulmonary complication rate was similar (7.1 per cent (216 of 3031) versus 6.3 per cent (274 of 4371); P = 0.158) but the mortality rate was significantly higher (0.7 per cent (20 of 3031) versus 2.0 per cent (87 of 4371); P  & lt; 0.001) among patients who had surgery during the pandemic. The adjusted odds of death were higher during than before the pandemic (odds ratio (OR) 2.72, 95 per cent c.i. 1.58 to 4.67; P  & lt; 0.001). In mediation analysis, 54.8 per cent of excess postoperative deaths during the pandemic were estimated to be attributable to SARS-CoV-2 (OR 1.73, 1.40 to 2.13; P  & lt; 0.001). Conclusion Although providers may have selected patients with a lower risk profile for surgery during the pandemic, this did not mitigate the likelihood of death through SARS-CoV-2 infection. Care providers must act urgently to protect surgical patients from SARS-CoV-2 infection.
    Type of Medium: Online Resource
    ISSN: 0007-1323 , 1365-2168
    URL: Article
    DOI: 10.1093/bjs/znab336
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 2006309-X
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