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1. Overlap of International League of Associations for Rheumatology and Preliminary Pediatric Rheumatology International Trials Organization Classification Criteria for Nonsystemic Juvenile Idiopathic Arthritis in an Established UK Multicentre Inception Cohort

Author

Shoop‐Worrall, Stephanie J. W., Macintyre, Vanessa G., Ciurtin, Coziana, Cleary, Gavin, McErlane, Flora, Wedderburn, Lucy R., Chieng, Alice, Ciurtin, Coziana, Baildam, Eileen, McErlane, Flora, Cleary, Gavin, Foster, Helen, Davidson, Joyce, Wedderburn, Lucy R., Ioannou, Yiannis, and Hyrich, Kimme L.

Published
2024
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3. Towards stratified treatment of JIA: machine learning identifies subtypes in response to methotrexate from four UK cohorts

Author

Kimonyo, Aline, McNeece, Alyssia, Dick, Andrew, Morris, Andrew, Yarwood, Annie, Ramanan, Athimalaipet, Jebson, Bethany R., Wallace, Chris, Dastros-Pitei, Daniela, Tarasek, Damian, Ralph, Elizabeth, Carlsson, Emil, Robinson, Emily, Sumner, Emma, Merali, Fatema, Dekaj, Fatjon, Neale, Helen, Al-Mossawi, Hussein, Roberts, Jacqui, Gritzfeld, Jenna F., Fairlie, Joanna, Bowes, John, Ioannou, John, Hyrich, Kimme L., Wedderburn, Lucy R., Kartawinata, Melissa, Tordoff, Melissa, Barnes, Michael, Beresford, Michael W., Stadler, Michael, Geifman, Nophar, Martin, Paul, Kallala, Rami, Ng, Sandra, Smith, Samantha, Clarke, Sarah, Lawson-Tovey, Saskia, Raychaudhuri, Soumya, Shoop-Worrall, Stephanie J.W., Eyre, Stephen, Mukherjee, Sumanta, Duerr, Teresa, Sornasse, Thierry, Alexiou, Vasiliki, Burton, Victoria J., Lin, Wei-Yu, Thomson, Wendy, and Wanstall, Zoe

Published
2024
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6. Can we predict remission in children with juvenile idiopathic arthritis?

Author

Shoop-Worrall, Stephanie, Thomson, Wendy, Hyrich, Kimme, and Verstappen, Suzanne

Subjects
618.92, Juvenile idiopathic arthritis, Remission, Epidemiology, Health Outcomes, Paediatric Rheumatology
Abstract

Background: Long-term consequences of active disease in juvenile idiopathic arthritis (JIA) include persistent pain, disability and potential joint replacement surgery. The aims of treatment are therefore clinically inactive disease (CID) and, ideally, sustained disease remission. This thesis set out to understand CID and remission in JIA: how they are defined, how commonly they are achieved, long-term outcomes following their achievement and whether they are associated with factors early in disease. Methods: The setting for this thesis was the UK Childhood Arthritis Prospective Study (CAPS), the largest multicentre, prospective inception cohort of JIA globally. Children and young people (CYP) were selected for each paper based on their dates of recruitment and categories of disease. At one year following initial presentation to paediatric rheumatology, CYP were classified as to whether they had fulfilled published criteria for CID. Initial analyses explored whether different definitions for CID identified the same groups of CYP. Outcomes to five years were then compared between those achieving all, some or none of the criteria for CID using multivariable, multilevel logistic (absence of limited joints), linear (quality of life) and zero-inflated negative binomial (functional ability) regression models. Finally, risk factors for remission (CID maintained over two annual follow-ups) were explored using multivariable logistic regression models. Throughout, multiple imputation under various assumptions was implemented for missing data. Results: The majority of CYP in CAPS were female (65%) and had oligoarthritis (50%). Median age at initial presentation was eight years (IQR 4, 12). At one year, fewer than 50% of CYP had achieved CID according to published definitions. There was poor overlap (44%) between groups of CYP identified by two validated definitions, whose main difference was the inclusion or exclusion of patient-reported wellbeing. The odds of no limited joints in the long-term did not differ between CYP fulfilling either definition of CID. However, CYP who achieved CID on scores which included wellbeing had superior long-term function (OR for no disability: 2.5, 95% CI 1.8, 3.5) and quality of life (β: 3.9, 95% CI 1.6, 6.2) to those who either did not achieve CID or only achieved it using inflammatory criteria (i.e. had persistent symptoms despite the absence of inflammation). Finally, there were few factors at initial presentation which were associated with remission. However, greater improvements in both physician and patient-reported variables over the first year following initial presentation were associated with higher odds of remission in the first three years. Conclusions: The disease burden in JIA remains high with over 50% of CYP not achieving CID within the first year of disease. Current definitions of CID available for use in clinical practice as potential treatment targets do not classify the same groups of CYP and are associated with different long-term outcomes. Further study is required to define the best outcome measures for CYP with JIA.

Published
2018

8. Patient-reported wellbeing and clinical disease measures over time captured by multivariate trajectories of disease activity in individuals with juvenile idiopathic arthritis in the UK: a multicentre prospective longitudinal study

Author

Baildam, Eileen, Barnes, Michael, Beresford, Michael W, Carlsson, Emil, Chieng, Alice, Ciurtin, Coziana, Cleary, Gavin, Davidson, Joyce, Dekaj, Fatjon, Dews, Sally-Anne, Dick, Andrew, Reynolds Diogo, Gil, Duerr, Teresa, Fairlie, Joanna, Foster, Helen, Gritzfeld, Jenna F, Ioannou, Yiannis, Jebson, Beth, Kartawinata, Melissa, Kent, Toby, Kimonyo, Aline, Lawson-Tovey, Saskia, Lin, Wei-Yu, Martin, Paul, McErlane, Flora, Merali, Fatema, Morris, Andrew, Neale, Helen, Neisen, Jessica, Ng, Sandra, Ralph, Elizabeth, Ramanan, Athimalaipet V, Raychaudhuri, Soumya, Robinson, Emily, Smith, Samantha, Sumner, Emma, Tarasek, Damian, Wallace, Chris, Wanstall, Zoe, Yarwood, Annie, Shoop-Worrall, Stephanie J W, Hyrich, Kimme L, Wedderburn, Lucy R, Thomson, Wendy, and Geifman, Nophar

Published
2021
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9. Towards stratified treatment of JIA: machine learning identifies subtypes in response to methotrexate from four UK cohorts

Author

Shoop-Worrall, Stephanie J.W., primary, Lawson-Tovey, Saskia, additional, Wedderburn, Lucy R., additional, Hyrich, Kimme L., additional, Geifman, Nophar, additional, Kimonyo, Aline, additional, McNeece, Alyssia, additional, Dick, Andrew, additional, Morris, Andrew, additional, Yarwood, Annie, additional, Ramanan, Athimalaipet, additional, Jebson, Bethany R., additional, Wallace, Chris, additional, Dastros-Pitei, Daniela, additional, Tarasek, Damian, additional, Ralph, Elizabeth, additional, Carlsson, Emil, additional, Robinson, Emily, additional, Sumner, Emma, additional, Merali, Fatema, additional, Dekaj, Fatjon, additional, Neale, Helen, additional, Al-Mossawi, Hussein, additional, Roberts, Jacqui, additional, Gritzfeld, Jenna F., additional, Fairlie, Joanna, additional, Bowes, John, additional, Ioannou, John, additional, Kartawinata, Melissa, additional, Tordoff, Melissa, additional, Barnes, Michael, additional, Beresford, Michael W., additional, Stadler, Michael, additional, Martin, Paul, additional, Kallala, Rami, additional, Ng, Sandra, additional, Smith, Samantha, additional, Clarke, Sarah, additional, Raychaudhuri, Soumya, additional, Shoop-Worrall, Stephanie J.W., additional, Eyre, Stephen, additional, Mukherjee, Sumanta, additional, Duerr, Teresa, additional, Sornasse, Thierry, additional, Alexiou, Vasiliki, additional, Burton, Victoria J., additional, Lin, Wei-Yu, additional, Thomson, Wendy, additional, and Wanstall, Zoe, additional

Published
2024
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10. EULAR recommendations for the management of psoriatic arthritis with pharmacological therapies: 2023 update

Author

Gossec, Laure, primary, Kerschbaumer, Andreas, additional, Ferreira, Ricardo J O, additional, Aletaha, Daniel, additional, Baraliakos, Xenofon, additional, Bertheussen, Heidi, additional, Boehncke, Wolf-Henning, additional, Esbensen, Bente Appel, additional, McInnes, Iain B, additional, McGonagle, Dennis, additional, Winthrop, Kevin L, additional, Balanescu, Andra, additional, Balint, Peter V, additional, Burmester, Gerd R, additional, Cañete, Juan D, additional, Claudepierre, Pascal, additional, Eder, Lihi, additional, Hetland, Merete Lund, additional, Iagnocco, Annamaria, additional, Kristensen, Lars Erik, additional, Lories, Rik, additional, Queiro, Rubén, additional, Mauro, Daniele, additional, Marzo-Ortega, Helena, additional, Mease, Philip J, additional, Nash, Peter, additional, Wagenaar, Wendy, additional, Savage, Laura, additional, Schett, Georg, additional, Shoop-Worrall, Stephanie J W, additional, Tanaka, Yoshiya, additional, Van den Bosch, Filip E, additional, van der Helm-van Mil, Annette, additional, Zabotti, Alen, additional, van der Heijde, Désirée, additional, and Smolen, Josef S, additional

Published
2024
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11. EULAR recommendations for the management of psoriatic arthritis with pharmacological therapies: 2023 update

Author

Gossec, L., Kerschbaumer, A., Ferreira, R.J.O., Aletaha, D., Baraliakos, X., Bertheussen, H., Boehncke, W., Esbensen, B.A., McInnes, I.B., McGonagle, D., Winthrop, K.L., Balanescu, A., Balint, P.V., Burmester, G.R., Cañete, J.D., Claudepierre, Pascal, Eder, Lihi, Hetland, Merete Lund, Iagnocco, Annamaria, Kristensen, Lars Erik, Lories, Rik, Queiro, Rubén, Mauro, Daniele, Marzo-Ortega, Helena, Mease, P.J., Nash, Peter, Wagenaar, Wendy, Savage, Laura, Schett, Georg, Shoop-Worrall, Stephanie J W, Tanaka, Yoshiya, Van den Bosch, Filip E, van der Helm-van Mil, Annette, Zabotti, Alen, van der Heijde, Désirée, Smolen, Josef S, Gossec, L., Kerschbaumer, A., Ferreira, R.J.O., Aletaha, D., Baraliakos, X., Bertheussen, H., Boehncke, W., Esbensen, B.A., McInnes, I.B., McGonagle, D., Winthrop, K.L., Balanescu, A., Balint, P.V., Burmester, G.R., Cañete, J.D., Claudepierre, Pascal, Eder, Lihi, Hetland, Merete Lund, Iagnocco, Annamaria, Kristensen, Lars Erik, Lories, Rik, Queiro, Rubén, Mauro, Daniele, Marzo-Ortega, Helena, Mease, P.J., Nash, Peter, Wagenaar, Wendy, Savage, Laura, Schett, Georg, Shoop-Worrall, Stephanie J W, Tanaka, Yoshiya, Van den Bosch, Filip E, van der Helm-van Mil, Annette, Zabotti, Alen, van der Heijde, Désirée, and Smolen, Josef S

Abstract

Objective New modes of action and more data on the efficacy and safety of existing drugs in psoriatic arthritis (PsA) required an update of the EULAR 2019 recommendations for the pharmacological treatment of PsA.Methods Following EULAR standardised operating procedures, the process included a systematic literature review and a consensus meeting of 36 international experts in April 2023. Levels of evidence and grades of recommendations were determined.Results The updated recommendations comprise 7 overarching principles and 11 recommendations, and provide a treatment strategy for pharmacological therapies. Non-steroidal anti-inflammatory drugs should be used in monotherapy only for mild PsA and in the short term; oral glucocorticoids are not recommended. In patients with peripheral arthritis, rapid initiation of conventional synthetic disease-modifying antirheumatic drugs is recommended and methotrexate preferred. If the treatment target is not achieved with this strategy, a biological disease-modifying antirheumatic drug (bDMARD) should be initiated, without preference among modes of action. Relevant skin psoriasis should orient towards bDMARDs targeting interleukin (IL)-23p40, IL-23p19, IL-17A and IL-17A/F inhibitors. In case of predominant axial or entheseal disease, an algorithm is also proposed. Use of Janus kinase inhibitors is proposed primarily after bDMARD failure, taking relevant risk factors into account, or in case bDMARDs are not an appropriate choice. Inflammatory bowel disease and uveitis, if present, should influence drug choices, with monoclonal tumour necrosis factor inhibitors proposed. Drug switches and tapering in sustained remission are also addressed.Conclusion These updated recommendations integrate all currently available drugs in a practical and progressive approach, which will be helpful in the pharmacological management of PsA.

Published
2024

12. EULAR recommendations for the management of psoriatic arthritis with pharmacological therapies:2023 update

Author

Gossec, Laure, Kerschbaumer, Andreas, Ferreira, Ricardo J. O., Aletaha, Daniel, Baraliakos, Xenofon, Bertheussen, Heidi, Boehncke, Wolf-Henning, Esbensen, Bente Appel, McInnes, Iain B., McGonagle, Dennis, Winthrop, Kevin L, Balanescu, Andra, Balint, Peter V, Burmester, Gerd R., Cañete, Juan D., Claudepierre, Pascal, Eder, Lihi, Hetland, Merete Lund, Iagnocco, Annamaria, Kristensen, Lars Erik, Lories, Rik, Queiro, Rubén, Mauro, Daniele, Marzo-Ortega, Helena, Mease, Philip J., Nash, Peter, Wagenaar, Wendy, Savage, Laura, Schett, Georg, Shoop-Worrall, Stephanie J.W., Tanaka, Yoshiya, Van Den Bosch, Filip E., van der Helm-van Mil, Annette, Zabotti, Alen, van der Heijde, Désirée, Smolen, Josef S, Gossec, Laure, Kerschbaumer, Andreas, Ferreira, Ricardo J. O., Aletaha, Daniel, Baraliakos, Xenofon, Bertheussen, Heidi, Boehncke, Wolf-Henning, Esbensen, Bente Appel, McInnes, Iain B., McGonagle, Dennis, Winthrop, Kevin L, Balanescu, Andra, Balint, Peter V, Burmester, Gerd R., Cañete, Juan D., Claudepierre, Pascal, Eder, Lihi, Hetland, Merete Lund, Iagnocco, Annamaria, Kristensen, Lars Erik, Lories, Rik, Queiro, Rubén, Mauro, Daniele, Marzo-Ortega, Helena, Mease, Philip J., Nash, Peter, Wagenaar, Wendy, Savage, Laura, Schett, Georg, Shoop-Worrall, Stephanie J.W., Tanaka, Yoshiya, Van Den Bosch, Filip E., van der Helm-van Mil, Annette, Zabotti, Alen, van der Heijde, Désirée, and Smolen, Josef S

Abstract

Objective New modes of action and more data on the efficacy and safety of existing drugs in psoriatic arthritis (PsA) required an update of the EULAR 2019 recommendations for the pharmacological treatment of PsA. Methods Following EULAR standardised operating procedures, the process included a systematic literature review and a consensus meeting of 36 international experts in April 2023. Levels of evidence and grades of recommendations were determined. Results The updated recommendations comprise 7 overarching principles and 11 recommendations, and provide a treatment strategy for pharmacological therapies. Non-steroidal anti-inflammatory drugs should be used in monotherapy only for mild PsA and in the short term; oral glucocorticoids are not recommended. In patients with peripheral arthritis, rapid initiation of conventional synthetic disease-modifying antirheumatic drugs is recommended and methotrexate preferred. If the treatment target is not achieved with this strategy, a biological disease-modifying antirheumatic drug (bDMARD) should be initiated, without preference among modes of action. Relevant skin psoriasis should orient towards bDMARDs targeting interleukin (IL)-23p40, IL-23p19, IL-17A and IL-17A/F inhibitors. In case of predominant axial or entheseal disease, an algorithm is also proposed. Use of Janus kinase inhibitors is proposed primarily after bDMARD failure, taking relevant risk factors into account, or in case bDMARDs are not an appropriate choice. Inflammatory bowel disease and uveitis, if present, should influence drug choices, with monoclonal tumour necrosis factor inhibitors proposed. Drug switches and tapering in sustained remission are also addressed. Conclusion These updated recommendations integrate all currently available drugs in a practical and progressive approach, which will be helpful in the pharmacological management of PsA., Objective: New modes of action and more data on the efficacy and safety of existing drugs in psoriatic arthritis (PsA) required an update of the EULAR 2019 recommendations for the pharmacological treatment of PsA. Methods: Following EULAR standardised operating procedures, the process included a systematic literature review and a consensus meeting of 36 international experts in April 2023. Levels of evidence and grades of recommendations were determined. Results: The updated recommendations comprise 7 overarching principles and 11 recommendations, and provide a treatment strategy for pharmacological therapies. Non-steroidal anti-inflammatory drugs should be used in monotherapy only for mild PsA and in the short term; oral glucocorticoids are not recommended. In patients with peripheral arthritis, rapid initiation of conventional synthetic disease-modifying antirheumatic drugs is recommended and methotrexate preferred. If the treatment target is not achieved with this strategy, a biological disease-modifying antirheumatic drug (bDMARD) should be initiated, without preference among modes of action. Relevant skin psoriasis should orient towards bDMARDs targeting interleukin (IL)-23p40, IL-23p19, IL-17A and IL-17A/F inhibitors. In case of predominant axial or entheseal disease, an algorithm is also proposed. Use of Janus kinase inhibitors is proposed primarily after bDMARD failure, taking relevant risk factors into account, or in case bDMARDs are not an appropriate choice. Inflammatory bowel disease and uveitis, if present, should influence drug choices, with monoclonal tumour necrosis factor inhibitors proposed. Drug switches and tapering in sustained remission are also addressed. Conclusion: These updated recommendations integrate all currently available drugs in a practical and progressive approach, which will be helpful in the pharmacological management of PsA.

Published
2024

18. Overlap of International League of Associations for Rheumatology and Preliminary Pediatric Rheumatology International Trials Organization Classification Criteria for Nonsystemic Juvenile Idiopathic Arthritis in an Established UKMulticentre Inception Cohort

Author

Shoop‐Worrall, Stephanie J. W., Macintyre, Vanessa G., Ciurtin, Coziana, Cleary, Gavin, McErlane, Flora, Wedderburn, Lucy R., Chieng, Alice, Ciurtin, Coziana, Baildam, Eileen, McErlane, Flora, Cleary, Gavin, Foster, Helen, Davidson, Joyce, Wedderburn, Lucy R., Ioannou, Yiannis, and Hyrich, Kimme L.

Abstract

The goal was to assess the degree of overlap between existing International League of Associations for Rheumatology (ILAR) and preliminary Paediatric Rheumatology International Trials Organisation (PRINTO) classification criteria for juvenile idiopathic arthritis (JIA). Participants from the Childhood Arthritis Prospective Study, a multicenter UK JIA inception cohort, were classified using the PRINTO and ILAR classification criteria into distinct categories. Systemic JIA was excluded because several classification items were not collected in this cohort. Adaptations to PRINTO criteria were required to apply to a UK health care setting, including limiting the number of blood biomarker tests required. The overlap between categories under the two systems was determined, and any differences in characteristics between groups were described. A total of 1,223 children and young people with a physician’s diagnosis of JIA were included. Using PRINTO criteria, the majority of the patients had “other JIA” (69.5%). There was a high degree of overlap (91%) between the PRINTO enthesitis/spondylitis‐ and ILAR enthesitis‐related JIA categories. The PRINTO rheumatoid factor (RF)–positive category was composed of 48% ILAR RF‐positive polyarthritis and 52% undifferentiated JIA. The early‐onset antinuclear antibodies–positive PRINTO category was largely composed of ILAR oligoarthritis (50%), RF‐negative polyarthritis (24%), and undifferentiated JIA (23%). A few patients were unclassified under PRINTO (n = 3) and would previously have been classified as enthesitis‐related JIA (n = 1) and undifferentiated JIA (n = 2) under ILAR. Under the preliminary PRINTO classification criteria for childhood arthritis, most children are not yet classified into a named category. These data can help support further delineation of the PRINTO criteria to ensure homogenous groups of children can be identified.

Published
2024
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21. The impact of psoriasis on wellbeing and clinical outcomes in juvenile psoriatic arthritis.

Author

Low, Jie Man, Hyrich, Kimme L, Ciurtin, Coziana, McErlane, Flora, Wedderburn, Lucy R, Geifman, Nophar, Shoop-Worrall, Stephanie J W, and Investigators, CAPS Principal

Subjects
MENTAL depression risk factors, PSORIATIC arthritis, JUVENILE idiopathic arthritis, PSORIASIS, VISUAL analog scale, QUESTIONNAIRES, SYMPTOMS, EVALUATION of medical care, PARENT attitudes, PHYSICIANS' attitudes, DESCRIPTIVE statistics, LONGITUDINAL method, RESEARCH, HEALTH outcome assessment, AFFECT (Psychology), CONFIDENCE intervals, WELL-being, REGRESSION analysis, DISEASE complications, CHILDREN
Abstract

Objectives Juvenile PsA (JPsA) has varied clinical features that are distinctive from other JIA categories. This study investigates whether such features impact patient-reported and clinical outcomes. Methods Children and young people (CYP) were selected if recruited to the Childhood Arthritis Prospective Study, a UK multicentre JIA inception cohort, between January 2001 and March 2018. At diagnosis, patient/parent-reported outcomes (as age-appropriate) included the parental global assessment (10 cm visual analogue scale), functional ability (Childhood Health Assessment Questionnaire (CHAQ)), pain (10 cm visual analogue scale), health-related quality of life (Child Health Questionnaire PF50 psychosocial score), mood/depressive symptoms (Moods and Feelings Questionnaire) and parent psychosocial health (General Health Questionnaire 30). Three-year outcome trajectories have previously been defined using active joint counts, physician and parent global assessments (PGA and PaGA, respectively). Patient-reported outcomes and outcome trajectories were compared in (i) CYP with JPsA vs other JIA categories and (ii) CYP within JPsA, with and without psoriasis via multivariable linear regression. Results There were no significant differences in patient-reported outcomes at diagnosis between CYP with JPsA and non-JPsA. Within JPsA, those with psoriasis had more depressive symptoms (coefficient = 9.8; 95% CI: 0.5, 19.0) than those without psoriasis at diagnosis. CYP with JPsA had 2.3 times the odds of persistent high PaGA than other ILAR categories, despite improving joint counts and PGA (95% CI: 1.2, 4.6). Conclusion CYP with psoriasis at JPsA diagnosis report worse mood, supporting a greater disease impact in those with both skin and joint involvement. Multidisciplinary care with added focus to support wellbeing in children with JPsA plus psoriasis may help improve these outcomes. [ABSTRACT FROM AUTHOR]

Published
2024
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22. Development and implementation of 'A guide to PPIE – Early Integration into Research Proposals' in a multi-disciplinary consortium.

Author

Beesley, Richard, Feilding, Freya Luling, Champions, CLUSTER Consortium, Rosser, Elizabeth C, Shoop-Worrall, Stephanie J W, McNeece, Alyssia, Wanstall, Zoe, Hyrich, Kimme, Wedderburn, Lucy R, and Consortium, the CLUSTER

Subjects
PATIENT participation, STRATEGIC planning, MEDICAL care research, PATIENTS' attitudes, HEALTH care teams, PLANNING techniques, MEDICAL research
Abstract

The article discusses the importance of integrating patient and public involvement and engagement (PPIE) in research proposals. Topics mentioned include the benefits of PPIE, the need of a guide on how researchers can work with patients to reduce the misunderstanding, and the value of patient involvement in research work.

Published
2024
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23. COVID-19-related anxiety trajectories in children, young people and adults with rheumatic diseases

Author

Research UMC Utrecht, Immuno/reuma ERN, Shoop-Worrall, Stephanie J.W., Verstappen, Suzanne M.M., Costello, Wendy, Angevare, Saskya P., Uziel, Yosef, Wouters, Carine, Wulffraat, Nico, Beesley, Richard, Research UMC Utrecht, Immuno/reuma ERN, Shoop-Worrall, Stephanie J.W., Verstappen, Suzanne M.M., Costello, Wendy, Angevare, Saskya P., Uziel, Yosef, Wouters, Carine, Wulffraat, Nico, and Beesley, Richard

Published
2023

24. Relationship between D-Dimers and Dead-Space on Disease Severity and Mortality in Covid-19 Acute Respiratory Distress Syndrome: A Retrospective Observational Cohort Study

Author

Camporota, Luigi, primary, Sanderson, Barnaby, additional, Worrall, Stephanie, additional, Ostermann, Marlies, additional, Barrett, Nicholas, additional, Retter, Andrew, additional, Busana, Mattia, additional, Collins, Patrick, additional, Romitti, Federica, additional, Hunt, Beverley J., additional, Rose, Louise, additional, Gattinoni, Luciano, additional, and Chiumello, Davide Alberto, additional

Published
2023
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33. Is time a healer? How quality of life changes over time reported by parents of children and young people with juvenile idiopathic arthritis.

Author

Smith, Andrew D, Saqib, Bishma, Lee, Rebecca Rachael, Shoop-Worrall, Stephanie, Hyrich, Kimme L, McDonagh, Janet E, and Cordingley, Lis

Subjects
PARENT attitudes, HEALTH status indicators, JUVENILE idiopathic arthritis, COMPARATIVE studies, QUALITY of life, QUESTIONNAIRES, DESCRIPTIVE statistics, RESEARCH funding
Abstract

Objective To investigate changes in health-related quality of life (HRQoL) in children and young people with JIA (Juvenile Idiopathic Arthritis) over 3 years following diagnosis. Methods Data on children and young people recruited to the Childhood Arthritis Prospective Study (CAPS) were selected if >5 years of age at diagnosis. HRQoL was assessed at diagnosis (baseline), 1 year and 3 years using the proxy-reported Child Health Questionnaire (CHQ) completed by a parent or guardian. The CHQ measures aspects of HRQoL including physical functioning and mental health. Analyses included descriptive statistics, comparison with a US reference population and analysis of CHQ scores longitudinally and by gender and age of onset. Results Using CHQ data from parents/guardians of 182 CAPS study participants [median age 9.6 years (interquartile range 7.2–12.2)], all HRQoL domains significantly improved over the 3 year follow-up, except general health perceptions. Physical health domains showed greater improvement than psychosocial domains, although psychosocial scores were generally higher than physical scores throughout. Although similar at diagnosis, at 1 year females had significantly worse HRQoL than males in physical functioning (P  = 0.03), bodily pain (P  = 0.03), mental health (P  = 0.00), social-emotional (P  = 0.02) and social-physical (P  < 0.001). Differences largely remained at 3 years. Age at onset was not significantly associated with HRQoL. Conclusion Children and young people with JIA have low HRQoL across domains compared with the reference population. This improves within 3 years of diagnosis, with the greatest improvement within the first year. Early developmentally appropriate clinical intervention is recommended to reduce both psychosocial and physical impact of JIA. The lower HRQoL scores of females require further investigation. [ABSTRACT FROM AUTHOR]

Published
2023
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34. COVID-19-related anxiety trajectories in children, young people and adults with rheumatic diseases.

Author

Shoop-Worrall, Stephanie J W, Verstappen, Suzanne M M, Costello, Wendy, Angevare, Saskya P, Uziel, Yosef, Wouters, Carine, Wulffraat, Nico, and Beesley, Richard

Abstract

Objectives Uncertainty regarding the risk of coronavirus disease 2019 (COVID-19), its complications and the safety of immunosuppressive therapies may drive anxiety among adults and parents of children and young people (CYP) with rheumatic diseases. This study explored trajectories of COVID-related anxiety in adults and parents of CYP with rheumatic diseases. Methods Adults and parents of CYP participating in the international COVID-19 European Patient Registry were included in the current study if they had enrolled in the 4 weeks following 24 March 2020. COVID-related anxiety scores (0–10) were collected weekly for up to 28 weeks. Group-based trajectory models explored COVID-related anxiety clusters in adult and parent populations, with optimal models chosen based on model fit, parsimony and clinical plausibility. Demographic, clinical and COVID-19 mitigation behaviours were compared between identified clusters using univariable statistics. Results In 498 parents of CYP and 2640 adults, four common trajectory groups of COVID-related anxiety were identified in each cohort: persistent extreme anxiety (32% and 17%), persistent high anxiety (43% and 41%), improving high anxiety (25% and 32%) and improving moderate anxiety (11% and 10%), respectively. Few characteristics distinguished the clusters in the parent cohort. Higher and more persistent anxiety clusters in the adult cohort were associated with higher levels of respiratory comorbidities, use of immunosuppressive therapies, older age and greater self-isolation. Conclusions COVID-19-related anxiety in the rheumatic disease community was high and persistent during the COVID-19 pandemic, with four common patterns identified. In the adult cohort, higher COVID-related anxiety was related to perceived risk factors for COVID-19 morbidity and mortality. [ABSTRACT FROM AUTHOR]

Published
2023
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35. Age and frailty are independently associated with increased covid-19 mortality and increased care needs in survivors: results of an international multi-centre study

Author

Alsahab, Mustafa, Beishon, Lucy, Brown, Bryony, Burn, Elinor, Burton, Jenni K, Cox, Natalie, Dani, Melanie, Elhadi, Muhammed, Freshwater, Sarah, Gaunt, Victoria, Gordon, Adam, Goujon, Marie, Hale, Matthew, Hughes, Terry, Jackson, Thomas A, Jelley, Benjamin, Khan, Asma, Khiroya, Heena, Lal, Rajni, Madden, Katy, Magill, Laura, Masoli, Jane, Masud, Tahir, McCluskey, Lauren, McNeela, Natalie, Mohammedseid-Nurhussien, Awolkhier, Moorey, Hannah, Lochlainn, Mary Ni, Nirantharakumar, Krishnarajah, Okoth, Kelvin, Osuafor, Christopher N, Patterson, Katherine, Pearson, Grace M E, Perry, Rita, Pettitt, Michala, Pigott, Jennifer, Pinkney, Thomas, Quinn, Terence, Reynolds, Abigail, Richardson, Sarah, Sanyal, Nik, Seed, Adam, Sleeman, Isobel, Soo, Chee, Steves, Claire, Strain, W David, Taylor, Joanne, Torsney, Kelli, Welch, Carly, Wilson, Daisy, Witham, Miles, Elazeem, Hossam Aldein S Abd, Abdelhafez, Mohammed H, Abdelmalak, Amir, Abdelwahab, Omar A, Abdulhadi, Osama M A S, Adewole, Olubayode, Ahmad, Mohammed, Ahmed, Eltayeb A, Ahmed, Hazem, Ahmed, Islam A, Akcay, Mertcan, Akdeniz, Yeşim, Akın, Emrah, Akladious, Carolyn, Alessandri, Francesco, Ali, Ali, Aljafari, Abdulmalek, Aljafari, Abdulmoiz, Al-Sadawi, Mohammed, Al-Sodani, Lobna, Altintoprak, Fatih, Amaratungaz, Gitanjali, Amer, Jocelyn, Amini, Sylvia, Amir, Taha, Anandarajah, Cheran, Anders, Rachael, Ansari, Muhammed H, Appiah, Kingsley, Atia, Jolene, Atkin, Catherine, Aujayeb, Avinash, Awad, Elsayed M, Azab, Mohammed A, Azam, Mohammad T, Aziz, Sally, Azzam, Ahmed Y, Babar, Laxmi, Babb, Laura, Badh, Manpreet, Baguneid, Clare, Bailey, Emily, Baili, Efstratia, Baldwin, Sarah, Baloyiannis, Ioannis, Bannerjee, Moulinath, Barnard, Anna, Barra, Fabio, Bashir, Hannah, Bawor, Monica, Bayhan, Zülfü, Belcher, James, Belgamwar, Ravindra, Bentley, Corrina, Birchenough, Amy, Bo, Yen Nee J, Boden, Hayley R, Bouhuwaish, Ahmad, Brachini, Gioia, Bremner, Laura, Bridgwater, Hannah, Bryant, Catherine, Budd, Gabrielle, Budd, Sharon, Budzikoski, Adam, Bulla, Reem, Buondonno, Antonio, Burden, Nicole, Butt, Hejab, Capoglu, Recayi, Caracostea, Andra, Cardoso, Rifa, Carr, Alexis, Carrasco-Prats, Milagros, Cattel, Caterina, Ceccarelli, Giancarlo, Cecere, Giuseppe, Charalabopoulos, Alexandros, Charsley, Evelyn, Cheney-Lowe, Hannah, Chevallier, Theodore, Choudhry, Asad J, Ciccarone, Flavia, Cicerchia, Pierfranco M, Cirillo, Bruno, Collins, Fatma D, Comerford, Victoria, Cordie, Ahmed, Coulter, Siobhan, Coulthard, Nick, Cox, Catrin, Cox, Victoria, Crowe, Andrew, Cullen, Jack, Cummings, Jean, Cunningham, Niamh, Curley, Daniel, Currie, Hannah, Daly, Madeleine, Darley, Jay, Dattani, Nikhita, Davakis, Spyridon, Davies, Rowan, De Paola, Gilda, De Toma, Giorgio, Del Valle-Ruiz, Sergio, Deldar, Benyamin, Demir, Hakan, Desai, Arjun, Desai, Nirali, Devaney, Alice, Dew, Lindsey, Dhesi, Jugdeep, Dias, Maria, Dick, Gordon, Doddamani, Parveen, Dogra, Gurinder, Doll, Tina, Dooley, Hannah C, Dost, Samiullah, Dotchin, Catherine, Dowell, Hannah, Draghita, Ioan M, Dundas, James M, Duranti, Giulia, Dusara, Hiren, Dwivedi, Rajesh, Dyer, Adam H, Eastaugh, Alison, Edwards, Elinor, Elghazaly, Shrouk M, Elmehrath, Ahmed O, Elrick, Hope, El-Shazly, Mostafa, Emery, Alexander, Etchill, Eric W, Evans, Sarah, Evison, Felicity, Fairhead, Cassandra, Faulkner, Margherita, Felska, Agnieszka, Fernandez, Antia, Fernández-Fernández, Pedro V, Ferraiolo, Antonella, Ferrero, Simone, Fiori, Enrico, Firat, Necattin, Fisk, Gracie, Fleck, Anna, Fonsi, Giovanni B, Gabre-Kidan, Alodia, Gallo, Gaetano, Gandhi, Ratnam, Garner, Madeleine, Georgiou, Nikolaos, Gerretsen, Hannah, Ghannam, Nourhan A A, Ghobrial, Andrew, Ghobrial, Hedra, Ghufoor, Zaynub, Gibbon, Jake, Gilbert, Georgia F, Giles, Marie, Giménez-Francés, Clara, Gonullu, Emre, Gray, Amy, Gray, Joshua H, Green, Deirdre, Greene, Charlotte, Griffin, Ellanna, Griffith, Karla, Grubb, Anthony, Guan, Yue, Guerero, Daniel N, Gupta, Ayushi, Gustavino, Claudio, Guzman, Laurenny, Hadreiez, Ahmed K M, Hajiioannou, Jiannis, Hanji, Deevia, Madhavan, Deepthy Hari, Harmantepe, Tarık, Harrison, Patrick, Hart, Barbara, Haslam, Aidan, Haunton, Victoria, Haut, Elliott R, Heinsohn, Torben, Hennah, Lindsay, Hetta, Helal F, Hickman, Alexander, Hobill, Abigail, Hogan, Patrick C P, Hogan, Vesna, Holmes, Elizabeth, Honney, Katie, Hood, Katharine, Hopkinson, Katherine, Howells, Lara, Hrouda, Nicole, Hunsley, Danielle, Hurst, William, Hussein, Rand A, Ibrahim, Mohamed Eltaher A A, Ibtida, Ishmam, Ibukunoluwakitan, Aina, Ishlek, Irem, Iyer, Rishi, Jackson, Karl, Jackson, Rosie, James, Ellen, Jarvis, Hayley, Jeffs, Sophie, Jenko, Nathan, Jeyakumar, Sasha, Kabir, Shahriar, Kainth, Harjinder, Kalloo, Jason, Kanzaria, Akhil, Karapanou, Amalia, Kardaman, Nuha, Karthikeyan, Sandeep, Karunatilleke, Anne, Kelly, Mairead, Kelly, Nicola I, Khalid, Hesham, Khan, Haris, Khan, Muhammad S, King, Matthew, Kneen, Thomas, Kok, Li, Kratochwila, Chiara, Kuzeva, Aneliya, Lapolla, Pierfrancesco, Lau, Rebecca, Law, Kar Yee, Leadbetter, Aimee, Lee, Gabriel, Lee, Helena, Levinson, Gavriella, Lewis, Grace, Liakakos, Theodore, Lim, Stephen, Lis, Danielle, Livesey, Emma, López-Morales, Pedro, Lowes, Lily, Lunt, Eleanor, Lyon, Emily, Madan, Suvira, Majid, Zeinab, Malapati, Harsha, Man, Jade, Mandane, Baguiasri, Manning, Sarah H, Mantoglu, Baris, Martínez-Sanz, Nuria, Marx, William, Masood, Almontacer E B, Maughan, Tom, Mawhinney, Jamie, Maxfield, Dominic, Mayer, Jordan, Maynard, Henry, McDonald, Claire, McGovern, Aine, Mclachlan, Sophie, Medina-Manuel, Esther, Meneghini, Simona, Metcalf, Michelle, Millwood-Hargrave, John, Mingoli, Andrea, Miu, Kelvin, Mohamed, Fawsiya, Mohamed, Soha M, Hussein, Aliae A R Mohamed, Mohammad, Abdulkader, Mohammed, Aaliya, Momen, Ahmed A, Moomo, Farhana, Mora-Guzmán, Ismael, Moriarty, Lizzie, Morrin, Hamilton, Morris, Claire, Moss, Nicholas, Moustafa, Mohamed M, Mpoura, Maria, Mubin, Mohammed, Muhtaroglu, Ali, Muir, Georgina, Mulhern, Stephanie, Muller, Daniel, Murphy, Declan C, Muzammil, Bushra, Nadkarni, Varun, Nageh, Mariam Albatoul, NasrEldin, Yasmin K, Nawaz, Wasim, Nguyen, Hanna, Cheallaigh, Cliona Ni, Noar, Alexander, North, Samuel, Nwolu, Favour, O’Docherty, Alice, Odutola, Omoteniola, O’Dwyer, Sinead, Ogochukwu, Olebu, O’Mahony, Catherine, Orlando, Lia, Osterdahl, Marc, Page, Christina, Panayotidis, Ismini, Pancholi, Shivam, Parkin, Jessica, Passby, Lauren C, Pastor-Pérez, Patricia, Patel, Harnish, Patel, Shefali, Penfold, Rose, Perinpanathan, Rupini, Perivoliotis, Konstantinos, Perra, Teresa, Pinkney, Martha, Pinotti, Enrico, Porcu, Alberto, Price, Angeline, Pugliese, Francesco, Puri, Prabhleen, Pytraczyk, Sylvia, Qaiser, Yusra, Qurashi, Maria, Radenkovic, Dina, Rajeswaran, Thurkka, Rapaport, Sarah F, Razzak, Tahmina, Reilly, Lara, Reynolds, Paul, Richardson, Alexandra, Roberts, Amelia, Roberts-Rhodes, Charlotte, Robinson, Tanya, Rocca, Aldo, Ross-Skinner, Emily, Ruiz-Marín, Miguel, Ryall, Rebecca, Saad, Alshaimaa M, Saad, Mahmoud M, Sadiq, Ambreen, Sammarco, Giuseppe, Sampanis, Michail A, Sanghvi, Hazel, Sapienza, Paolo, Sayers, Ross, Scott, Luca, Sen, Michael, Shaban, Mosab A A, Shakespeare, Kathleen T, Shaw, Ellie, Shaw, Hannah, Sheldrake, Jonathan, Sim, Sing Yang, Simonelli, Luigi, Sipsas, Nikolaos V, Sivam, Jarita, Sivarajan, Sri, Smith, Jennifer, Speranza, Fabio, Spice, Claire, Stafford, Amanda, Stambollouian, Katharine, Stevens, Kent A, Stewart, Jack, Stratton, Emma, Street, Hannah, Surtees, Michael, Swinnerton, Emma, Taher, Ahmed S A, Tait, Caroline, Taylor, Amybel, Thake, Miriam, Thin, Katie, Thould, Hannah, Thyn, Thyn, To, Benjaman, Tobiss, Hannah, Toppley, Kathryn, Townsend, Liam, Tullo, Ellen, Tzovaras, George, Umeadi, Anthony, Vaidya, Hrisheekesh, Valero-Soriano, María, Varden, Rosanna, Vergani, Vittoria, Vervoort, Dominique, Vescio, Giuseppina, Vettasseri, Mark, Virk, Madiha, Vyas, Vaishali, Wagland, Joanne, Wallis, Stephanie, Warner, Chloe, Watkins, Eleanor, Watson, Hannah, Webb, Rachael, Welsh, Sarah H, West, Ruth, Whelan, Elisha, Whitney, Julie, Whitsey, Mark, Wilcock, Catherine, Wilkinson, Iain, Williams, David, Williamson, Megan, Willott, Ruth H, Wimalasundera, Mettha, Win, Yu Lelt, Winter, Laura, Worrall, Stephanie, Wright, Rebecca, Yeo, Natalie, Yeung, Eirene, Yigit, Merve, Yildiz, Yasin A, Yusuf, Humza, Zambon, Martina, Zaw, Hein, and Elabedeen, Omar Zein

Subjects
Male, Aging, medicine.medical_specialty, Frail Elderly, COVID-19, delirium, frailty, mortality, transitions of care, Cohort Studies, AcademicSubjects/MED00280, Interquartile range, Internal medicine, medicine, Dementia, Humans, Survivors, Aged, Proportional hazards model, business.industry, SARS-CoV-2, Hazard ratio, Odds ratio, General Medicine, medicine.disease, Confidence interval, frailty,COVID-19, Ageing, Delirium, Female, medicine.symptom, Geriatrics and Gerontology, business, Cohort study, Research Paper
Abstract

Introduction Increased mortality has been demonstrated in older adults with coronavirus disease 2019 (COVID-19), but the effect of frailty has been unclear. Methods This multi-centre cohort study involved patients aged 18 years and older hospitalised with COVID-19, using routinely collected data. We used Cox regression analysis to assess the impact of age, frailty and delirium on the risk of inpatient mortality, adjusting for sex, illness severity, inflammation and co-morbidities. We used ordinal logistic regression analysis to assess the impact of age, Clinical Frailty Scale (CFS) and delirium on risk of increased care requirements on discharge, adjusting for the same variables. Results Data from 5,711 patients from 55 hospitals in 12 countries were included (median age 74, interquartile range [IQR] 54–83; 55.2% male). The risk of death increased independently with increasing age (>80 versus 18–49: hazard ratio [HR] 3.57, confidence interval [CI] 2.54–5.02), frailty (CFS 8 versus 1–3: HR 3.03, CI 2.29–4.00) inflammation, renal disease, cardiovascular disease and cancer, but not delirium. Age, frailty (CFS 7 versus 1–3: odds ratio 7.00, CI 5.27–9.32), delirium, dementia and mental health diagnoses were all associated with increased risk of higher care needs on discharge. The likelihood of adverse outcomes increased across all grades of CFS from 4 to 9. Conclusion Age and frailty are independently associated with adverse outcomes in COVID-19. Risk of increased care needs was also increased in survivors of COVID-19 with frailty or older age.

Published
2021

36. Patient-reported wellbeing and clinical disease measures over time captured by multivariate trajectories of disease activity in individuals with juvenile idiopathic arthritis in the UK: a multicentre prospective longitudinal study

Author

Shoop-Worrall, Stephanie JW, Hyrich, Kimme L, Wedderburn, Lucy R, Thomson, Wendy, Geifman, Nophar, CAPS the CLUSTER Consortium, and Apollo - University of Cambridge Repository

Subjects
CAPS the CLUSTER Consortium
Abstract

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a heterogeneous disease, the signs and symptoms of which can be summarised with use of composite disease activity measures, including the clinical Juvenile Arthritis Disease Activity Score (cJADAS). However, clusters of children and young people might experience different global patterns in their signs and symptoms of disease, which might run in parallel or diverge over time. We aimed to identify such clusters in the 3 years after a diagnosis of JIA. The identification of these clusters would allow for a greater understanding of disease progression in JIA, including how physician-reported and patient-reported outcomes relate to each other over the JIA disease course. METHODS: In this multicentre prospective longitudinal study, we included children and young people recruited before Jan 1, 2015, to the Childhood Arthritis Prospective Study (CAPS), a UK multicentre inception cohort. Participants without a cJADAS score were excluded. To assess groups of children and young people with similar disease patterns in active joint count, physician's global assessment, and patient or parental global evaluation, we used latent profile analysis at initial presentation to paediatric rheumatology and multivariate group-based trajectory models for the following 3 years. Optimal models were selected on the basis of a combination of model fit, clinical plausibility, and model parsimony. FINDING: Between Jan 1, 2001, and Dec 31, 2014, 1423 children and young people with JIA were recruited to CAPS, 239 of whom were excluded, resulting in a final study population of 1184 children and young people. We identified five clusters at baseline and six trajectory groups using longitudinal follow-up data. Disease course was not well predicted from clusters at baseline; however, in both cross-sectional and longitudinal analyses, substantial proportions of children and young people had high patient or parent global scores despite low or improving joint counts and physician global scores. Participants in these groups were older, and a higher proportion of them had enthesitis-related JIA and lower socioeconomic status, compared with those in other groups. INTERPRETATION: Almost one in four children and young people with JIA in our study reported persistent, high patient or parent global scores despite having low or improving active joint counts and physician's global scores. Distinct patient subgroups defined by disease manifestation or trajectories of progression could help to better personalise health-care services and treatment plans for individuals with JIA. FUNDING: Medical Research Council, Versus Arthritis, Great Ormond Street Hospital Children's Charity, Olivia's Vision, and National Institute for Health Research.

Published
2021

42. No evidence that genetic predictors of susceptibility predict changes in core outcomes in JIA.

Author

Yarwood, Annie, Shoop-Worrall, Stephanie, López-Isac, Elena, Smith, Samantha Louise, Morris, Andrew P, group, Childhood Arthritis Prospective Study (CAPS), Bowes, John David, Tordoff, Melissa, Hyrich, Kimme L., Thomson, Wendy, and Eyre, Stephen

Subjects
*GENETICS of disease susceptibility, *DISEASE progression, *PREDICTIVE tests, *SINGLE nucleotide polymorphisms, *MULTIPLE regression analysis, *AGE distribution, *JUVENILE idiopathic arthritis, *HEALTH outcome assessment, *ACQUISITION of data, *RISK assessment, *MEDICAL records, *DESCRIPTIVE statistics, *LONGITUDINAL method
Abstract

Objectives The clinical progression of JIA is unpredictable. Knowing who will develop severe disease could facilitate rapid intensification of therapies. We use genetic variants conferring susceptibility to JIA to predict disease outcome measures. Methods A total of 713 JIA patients with genotype data and core outcome variables (COVs) at diagnosis (baseline) and 1 year follow-up were identified from the Childhood Arthritis Prospective Study (CAPS). A weighted genetic risk score (GRS) was generated, including all single nucleotide polymorphisms (SNPs) previously associated with JIA susceptibility (P -value < 5×10−08). We used multivariable linear regression to test the GRS for association with COVS (limited joint count, active joint count, physician global assessment, parent/patient general evaluation, childhood HAQ and ESR) at baseline and change in COVS from baseline to 1 year, adjusting for baseline COV and International League of Associations of Rheumatology (ILAR) category. The GRS was split into quintiles to identify high (quintile 5) and low (quintile 1) risk groups. Results Patients in the high-risk group for the GRS had a younger age at presentation (median low risk 7.79, median high risk 3.51). No association was observed between the GRS and any outcome measures at 1 year follow-up or baseline. Conclusion For the first time we have used all known JIA genetic susceptibility loci (P =<5×10−08) in a GRS to predict changes in disease outcome measured over time. Genetic susceptibility variants are poor predictors of changes in core outcome measures, it is likely that genetic factors predicting disease outcome are independent to those predicting susceptibility. The next step will be to conduct a genome-wide association analysis of JIA outcome. [ABSTRACT FROM AUTHOR]

Published
2022
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43. Common Functional Ability Score for Young People With Juvenile Idiopathic Arthritis

Author

Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Child Health, Infection & Immunity, Regenerative Medicine and Stem Cells, Onderzoek, Shoop-Worrall, Stephanie Jw, Oude Voshaar, Martijn Ah, McDonagh, Janet E, Van de Laar, Mart Afj, Wulffraat, Nico, Thomson, Wendy, Hyrich, Kimme L, Verstappen, Suzanne Mm, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Child Health, Infection & Immunity, Regenerative Medicine and Stem Cells, Onderzoek, Shoop-Worrall, Stephanie Jw, Oude Voshaar, Martijn Ah, McDonagh, Janet E, Van de Laar, Mart Afj, Wulffraat, Nico, Thomson, Wendy, Hyrich, Kimme L, and Verstappen, Suzanne Mm

Published
2021

46. Patient-reported wellbeing and clinical disease measures over time captured by multivariate trajectories of disease activity in individuals with juvenile idiopathic arthritis in the UK: a multicentre prospective longitudinal study

Author

Shoop-Worrall, Stephanie J W, primary, Hyrich, Kimme L, additional, Wedderburn, Lucy R, additional, Thomson, Wendy, additional, Geifman, Nophar, additional, Baildam, Eileen, additional, Barnes, Michael, additional, Beresford, Michael W, additional, Carlsson, Emil, additional, Chieng, Alice, additional, Ciurtin, Coziana, additional, Cleary, Gavin, additional, Davidson, Joyce, additional, Dekaj, Fatjon, additional, Dews, Sally-Anne, additional, Dick, Andrew, additional, Reynolds Diogo, Gil, additional, Duerr, Teresa, additional, Fairlie, Joanna, additional, Foster, Helen, additional, Gritzfeld, Jenna F, additional, Ioannou, Yiannis, additional, Jebson, Beth, additional, Kartawinata, Melissa, additional, Kent, Toby, additional, Kimonyo, Aline, additional, Lawson-Tovey, Saskia, additional, Lin, Wei-Yu, additional, Martin, Paul, additional, McErlane, Flora, additional, Merali, Fatema, additional, Morris, Andrew, additional, Neale, Helen, additional, Neisen, Jessica, additional, Ng, Sandra, additional, Ralph, Elizabeth, additional, Ramanan, Athimalaipet V, additional, Raychaudhuri, Soumya, additional, Robinson, Emily, additional, Smith, Samantha, additional, Sumner, Emma, additional, Tarasek, Damian, additional, Wallace, Chris, additional, Wanstall, Zoe, additional, and Yarwood, Annie, additional

Published
2021
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48. Comparing Proxy, Adolescent, and Adult Assessments of Functional Ability in Adolescents With Juvenile Idiopathic Arthritis

Author

Shoop‐Worrall, Stephanie J. W., primary, Hyrich, Kimme L., additional, Verstappen, Suzanne M. M., additional, Sergeant, Jamie C., additional, Baildam, Eileen, additional, Chieng, Alice, additional, Davidson, Joyce, additional, Foster, Helen, additional, Ioannou, Yiannis, additional, McErlane, Flora, additional, Wedderburn, Lucy R., additional, Thomson, Wendy, additional, and McDonagh, Janet E., additional

Published
2020
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49. Additional file 1 of Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

Author

Lunt, Laura E., Shoop-Worrall, Stephanie, Smith, Nicola, Cleary, Gavin, McDonagh, Janet, Smith, Andrew D., Thomson, Wendy, and McErlane, Flora

Abstract

Additional file 1: Supplementary Table S1. Patient Reported Outcome and Experience Measures for Children Aged < 11 Years. Supplementary Table S2. Patient Reported Outcome and Experience Measures for Young People Aged ≥ 11 years.

Published
2020
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50. Methotrexate response clusters in JIA

Author

Shoop-Worrall, Stephanie, Hyrich, Kimme, Wedderburn, LR, Thomson, Wendy, and Geifman, Nophar

Abstract

BackgroundTreatment response in juvenile idiopathic arthritis (JIA) is currently viewed as a binary outcome of response versus non-response. In a heterogenous disease such as JIA, it is likely that different, identifiable clusters of children and young people (CYP) may display varying patterns of the different features of the disease. Identifying these response clusters is an important step toward stratified medicine in JIA. The aim of the study was to explore trajectories of juvenile arthritis disease activity score (JADAS) components following methotrexate (MTX) initiation for JIA.MethodsMTX-naïve CYP with JIA were selected if enrolled prior to January 2018 in either the UK BSPAR Etanercept Register or the Biologics for Children with Rheumatic Diseases Study at point of starting MTX. JADAS components (active joint count, physician’s global assessment (0-10cm), parental global evaluation (0-10cm) and standardised ESR (0-10) were calculated based on data collected in the year following MTX initiation. Multivariate group-based trajectory models were used to explore MTX response clusters across the different JADAS components, using censored-normal (global scores, ESR) and zero-inflated Poisson (active joint count) models. Optimal models were selected based on a combination of model fit (BIC), parsimony and clinical plausibility.ResultsOf 611 CYP selected, the majority were female (69%) and of white ethnicity (85%), with RF-negative JIA the most common disease category (33%). The optimal model identified multiple patterns of disease activity following initiation of MTX, which have greater complexity than simple ‘response’ versus ‘non-response’ clusters. Differences between clusters included initial intensity of disease features and speeds of improvement over time. In addition, the components of the JADAS did not always follow similar patterns over time, even within the same outcome cluster.ConclusionThis study has identified that within CYP initiating MTX, different patterns of disease activity are apparent, suggesting that a simple responder/non-responder analysis at a set point may be inadequate. Understanding both clinical factors associated with, and biological mechanisms underpinning, these clusters would aid stratified medicine in JIA.DisclosuresS.J.W. Shoop-Worrall None. K.L. Hyrich None. L.R. Wedderburn None. W. Thomson None. N. Geifman None.

Published
2020
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