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Stroke frequency, associated factors, and clinical features in primary systemic vasculitis: A multicentric observational study (2024)
Journal Article
Geraldes, R., Robson, J. C., Santos, M., Ponte, C., Craven, A., Barra, L., …Luqmani, R. A. (in press). Stroke frequency, associated factors, and clinical features in primary systemic vasculitis: A multicentric observational study. Journal of Neurology, https://doi.org/10.1007/s00415-024-12251-1

Objectives: The cerebral vessels may be affected in primary systemic vasculitis (PSV), but little is known about cerebrovascular events (CVEs) in this population. This study aimed to determine the frequency of CVEs at the time of diagnosis of PSV, to... Read More about Stroke frequency, associated factors, and clinical features in primary systemic vasculitis: A multicentric observational study.

Shared decision making between physicians and patients (2024)
Journal Article
Robson, J., Diaz Encarnacion, M. M., Verhoeven, P., Olivenza Anton, R., Balcells-Oliver, M., Popov, T., …Kronbichler, A. (in press). Shared decision making between physicians and patients. Annals of the Rheumatic Diseases,

No abstract as this is a letter to the editor

Nurse‐led care for people with early rheumatoid arthritis: Interview study with thematic analysis (2023)
Journal Article
Sweeney, A. M. T., Flurey, C. A., McCabe, C. S., Robson, J. C., Richards, P., & Ndosi, M. (2023). Nurse‐led care for people with early rheumatoid arthritis: Interview study with thematic analysis. Musculoskeletal Care, 21(4), 1651-1661. https://doi.org/10.1002/msc.1844

Aims: To develop an understanding of what comprises nurse-led care in early rheumatoid arthritis from the perspective of rheumatology nurse specialists in England. Design: Qualitative study. Methods: Semi-structured telephone interviews with rheumato... Read More about Nurse‐led care for people with early rheumatoid arthritis: Interview study with thematic analysis.

Relapse after cessation of weekly tocilizumab for giant cell arteritis: A multicentre service evaluation in England (2023)
Journal Article
Quick, V., Abusalameh, M., Ahmed, S., Alkoky, H., Bukhari, M., Carter, S., …Mackie, S. L. (in press). Relapse after cessation of weekly tocilizumab for giant cell arteritis: A multicentre service evaluation in England. Rheumatology, https://doi.org/10.1093/rheumatology/kead604

Objectives: The National Health Service in England funds 12 months of weekly subcutaneous tocilizumab (qwTCZ) for patients with relapsing or refractory giant cell arteritis (GCA). During the COVID-19 pandemic, some patients were allowed longer treatm... Read More about Relapse after cessation of weekly tocilizumab for giant cell arteritis: A multicentre service evaluation in England.

Validation of a new glucocorticoid-specific Patient-Reported Outcome Questionnaire (the Steroid PRO) (2023)
Journal Article
Bridgewater, S., Ndosi, M., Dawson, J., Richards, P., Silverthorne, C., Dures, E., …Robson, J. C. (2024). Validation of a new glucocorticoid-specific Patient-Reported Outcome Questionnaire (the Steroid PRO). Annals of the Rheumatic Diseases, 83(3), 394-400. https://doi.org/10.1136/ard-2023-224946

Objectives: Glucocorticoids used in the treatment of inflammatory rheumatic conditions can impact on health-related quality of life. An underpinning qualitative study developed a long-list of candidate items for a treatment-specific patient-reported... Read More about Validation of a new glucocorticoid-specific Patient-Reported Outcome Questionnaire (the Steroid PRO).

Jaw claudication and jaw stiffness in giant cell arteritis: Secondary analysis of a qualitative research dataset (2023)
Journal Article
Lim, J., Dures, E., Bailey, L. F., Almeida, C., Ruediger, C., Hill, C., …MacKie, S. L. (2024). Jaw claudication and jaw stiffness in giant cell arteritis: Secondary analysis of a qualitative research dataset. Rheumatology Advances in Practice, 8(1), Article rkad082. https://doi.org/10.1093/rap/rkad082

Objective: Jaw symptoms can be a vital clue to the diagnosis of GCA. Guidelines recommend more intensive treatment if jaw claudication is present. We sought to explore how patients with GCA described their jaw symptoms. Methods: We carried out a seco... Read More about Jaw claudication and jaw stiffness in giant cell arteritis: Secondary analysis of a qualitative research dataset.

Validation of a patient-reported outcome measure for giant cell arteritis (2023)
Journal Article
Ndosi, M., Almeida, C., Dawson, J., Dures, E., Greenwood, R., Bromhead, A., …Robson, J. C. (2024). Validation of a patient-reported outcome measure for giant cell arteritis. Rheumatology, 63(1), 181-189. https://doi.org/10.1093/rheumatology/kead201

OBJECTIVES: GCA is systemic vasculitis manifesting as cranial, ocular or large vessel vasculitis. A prior qualitative study developed 40 candidate items to assess the impact of GCA on health-related quality of life (HRQoL). This study aimed to determ... Read More about Validation of a patient-reported outcome measure for giant cell arteritis.

Association of the AAV-PRO questionnaire with established outcome measures in AAV (2023)
Journal Article
Maunz, A., Jacoby, J., Henes, J., Robson, J. C., Hellmich, B., & Löffler, C. (2024). Association of the AAV-PRO questionnaire with established outcome measures in AAV. Rheumatology, 63(1), 174-180. https://doi.org/10.1093/rheumatology/kead199

OBJECTIVES: The ANCA-associated vasculitis (AAV) patient-reported outcome (AAV-PRO) questionnaire was developed to capture the impact of AAV and its treatment. We investigated the association of specific AAV-PRO domains with disease activity and exte... Read More about Association of the AAV-PRO questionnaire with established outcome measures in AAV.

E038 A common measure of the impact of glucocorticoids in patients with inflammatory and autoimmune conditions - The Steroid PRO: A cross-cultural validation study with Rasch models (2023)
Journal Article
Bridgewater, S., Ndosi, M., Dawson, J., Richards, P., Silverthorne, C., Dures, E., …Robson, J. C. (2023). E038 A common measure of the impact of glucocorticoids in patients with inflammatory and autoimmune conditions - The Steroid PRO: A cross-cultural validation study with Rasch models. Rheumatology, 62(Supplement_2), ii143. https://doi.org/10.1093/rheumatology/kead104.287

Background/Aims Systemic glucocorticoids are key in the management of life- and organ-threatening rheumatic diseases, but have wide-ranging adverse effects of concern to patients and clinicians. We aimed to validate a Patient Reported Outcome (PRO) m... Read More about E038 A common measure of the impact of glucocorticoids in patients with inflammatory and autoimmune conditions - The Steroid PRO: A cross-cultural validation study with Rasch models.

Measuring the impact of steroid therapy on health-related quality of life in patients with rheumatic diseases: International development of a glucocorticoid treatment-specific patient-reported outcome measure (2023)
Journal Article
Bridgewater, S., Shepherd, M. A., Dawson, J., Richards, P., Silverthorne, C., Ndosi, M., …Robson, J. C. (2023). Measuring the impact of steroid therapy on health-related quality of life in patients with rheumatic diseases: International development of a glucocorticoid treatment-specific patient-reported outcome measure. Rheumatology, 62(11), 3565–3575. https://doi.org/10.1093/rheumatology/kead081

OBJECTIVES: Glucocorticoids (GCs) ('steroids') are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-speci... Read More about Measuring the impact of steroid therapy on health-related quality of life in patients with rheumatic diseases: International development of a glucocorticoid treatment-specific patient-reported outcome measure.

Assessing glucocorticoid toxicity: Are the measures sensitive enough? (2023)
Journal Article
Robson, J. C., Dawson, J., & Ndosi, M. (2023). Assessing glucocorticoid toxicity: Are the measures sensitive enough?. The Lancet Rheumatology, 5(3), e113-e114. https://doi.org/10.1016/S2665-9913%2823%2900037-1

The Glucocorticoid Toxicity Index (GTI) is a composite instrument designed to capture change in glucocorticoid-related morbidity over time.1 It was developed through consensus methods and multi- criteria decisions among 19 medical specialists, with... Read More about Assessing glucocorticoid toxicity: Are the measures sensitive enough?.

Health professionals' perspectives on psychological distress and meeting patients' support needs in rheumatology care settings: A qualitative study (2023)
Journal Article
Silverthorne, C., Daniels, J., Thompson, M., Robson, J. C., Ndosi, M., Swales, C., …Dures, E. (2023). Health professionals' perspectives on psychological distress and meeting patients' support needs in rheumatology care settings: A qualitative study. Musculoskeletal Care, 21(2), 537-544. https://doi.org/10.1002/msc.1730

Background: Patients with inflammatory rheumatic diseases (IRDs) face challenges including pain, fatigue and disease flares. Evidence suggests their levels of anxiety and depression are higher compared to the general population. Rheumatology teams re... Read More about Health professionals' perspectives on psychological distress and meeting patients' support needs in rheumatology care settings: A qualitative study.

ANCA associated vasculitis subtypes: Response (response to letter) (2022)
Journal Article
Austin, K., Janagan, S., Wells, M., Crawshaw, H., McAdoo, S., & Robson, J. C. (2022). ANCA associated vasculitis subtypes: Response (response to letter). Journal of Inflammation Research, 15, 5687-5688. https://doi.org/10.2147/JIR.S387397

Many thanks for the opportunity to respond to the interesting letter to the Editor from Merkel, Jayne, and Bekker, with regard to our publication “ANCA Associated Vasculitis Subtypes: Recent Insights and Future Perspectives”.1 In the management se... Read More about ANCA associated vasculitis subtypes: Response (response to letter).

Reply - October 2022 (2022)
Journal Article
Grayson, P. C., Ponte, C., Robson, J. C., Suppiah, R., Judge, A., Hutchings, A., …Merkel, P. A. (2022). Reply - October 2022. Arthritis and Rheumatology, 74(10), 1725-1726. https://doi.org/10.1002/art.42267

Drs. Yazici and Yazici question a specific aspect of the methodology used to develop and validate the 2022 ACR/EULAR classification criteria for ANCA-associated vasculitides. They state concerns with the fact that patients recruited into the Diagnost... Read More about Reply - October 2022.

Comment on: Benchmarking tocilizumab use for giant cell arteritis (2022)
Journal Article
Janagan, S., Guly, C., Skeoch, S., & Robson, J. C. (2022). Comment on: Benchmarking tocilizumab use for giant cell arteritis. Rheumatology Advances in Practice, 6(3), Article rkac069. https://doi.org/10.1093/rap/rkac069

It is with great interest we read the editorial on tocilizumab (TCZ) use in giant cell arteritis (GCA) published on 9th May, 2022 by Conway et al [1]. We write to share some of our data to add weight to the views expressed, particularly in relation t... Read More about Comment on: Benchmarking tocilizumab use for giant cell arteritis.

P301 Patient reported outcome measure for giant cell arteritis: Clinical testing (2022)
Journal Article
Almeida, C., Guly, C., Mackie, S., Bromhead, A., Stern, S., Dures, E., …Robson, J. C. (2022). P301 Patient reported outcome measure for giant cell arteritis: Clinical testing. Rheumatology, 61(Supplement_1), Article keac133.300. https://doi.org/10.1093/rheumatology/keac133.300

Background/Aims Giant cell arteritis (GCA) presents in people over 50, with headaches, visual involvement and large vessel vasculitis. A 30-item GCA-specific patient reported outcome measure (GCA PRO) was developed and tested in a clinical setting t... Read More about P301 Patient reported outcome measure for giant cell arteritis: Clinical testing.

P289 The effectiveness of interventions to reduce psychological distress in patients with autoimmune rheumatic conditions: A systematic review of effectiveness (2022)
Journal Article
Hulley-Mills, J., Silverthorne, C., Jones, B., Hooper, J., Robson, J., Dures, E., …Ndosi, M. (2022). P289 The effectiveness of interventions to reduce psychological distress in patients with autoimmune rheumatic conditions: A systematic review of effectiveness. Rheumatology, 61(Supplement_1), https://doi.org/10.1093/rheumatology/keac133.288

Background/Aims Autoimmune rheumatic conditions are multisystem chronic disorders associated with increased psychological distress. Consequences include poor medication adherence and high levels of disease activity. Psychological interventions may r... Read More about P289 The effectiveness of interventions to reduce psychological distress in patients with autoimmune rheumatic conditions: A systematic review of effectiveness.

2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for microscopic polyangiitis (2022)
Journal Article
Watts, R. A., Luqmani, R. A., Merkel, P. A., Hutchings, A., Judge, A., Khalid, S., …Suppiah, R. (2022). 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for microscopic polyangiitis. Annals of the Rheumatic Diseases, 81(3), 321-326. https://doi.org/10.1136/annrheumdis-2021-221796

OBJECTIVE: To develop and validate classification criteria for microscopic polyangiitis (MPA). METHODS: Patients with vasculitis or comparator diseases were recruited into an international cohort. The study proceeded in five phases: (1) identificatio... Read More about 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for microscopic polyangiitis.

2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for eosinophilic granulomatosis with polyangiitis (2022)
Journal Article
Grayson, P. C., Ponte, C., Suppiah, R., Robson, J. C., Craven, A., Judge, A., …Merkel, P. A. (2022). 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for eosinophilic granulomatosis with polyangiitis. Annals of the Rheumatic Diseases, 81(3), 309-314. https://doi.org/10.1136/annrheumdis-2021-221794

Objective To develop and validate revised classification criteria for eosinophilic granulomatosis with polyangiitis (EGPA). Methods Patients with vasculitis or comparator diseases were recruited into an international cohort. The study proceeded in... Read More about 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for eosinophilic granulomatosis with polyangiitis.

2022 American College of Rheumatology/European Alliance of Associations for rheumatology classification criteria for microscopic polyangiitis (2022)
Journal Article
Suppiah, R., Robson, J., Grayson, P., Ponte, C., Craven, A., Khalid, S., …Watts, R. (2022). 2022 American College of Rheumatology/European Alliance of Associations for rheumatology classification criteria for microscopic polyangiitis. Arthritis and Rheumatology, 74(3), 400-406. https://doi.org/10.1002/art.41983

ABSTRACT Objective: To develop and validate classification criteria for microscopic polyangiitis (MPA). Methods: Patients with vasculitis or comparator diseases were recruited into an international cohort. The study proceeded in five phases: i) Id... Read More about 2022 American College of Rheumatology/European Alliance of Associations for rheumatology classification criteria for microscopic polyangiitis.

2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for eosinophilic granulomatosis with polyangiitis (2022)
Journal Article
Honma, S., Schiavon, F., Salvarani, C., Molloy, E., Berglin, E., Moreno, X. S., …Merkel, P. (2022). 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for eosinophilic granulomatosis with polyangiitis. Arthritis and Rheumatology, 74(3), 386-392. https://doi.org/10.1002/art.41982

Objective: To develop and validate revised classification criteria for eosinophilic granulomatosis with polyangiitis (EGPA). Methods: Patients with vasculitis or comparator diseases were recruited into an international cohort. The study proceeded in... Read More about 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for eosinophilic granulomatosis with polyangiitis.

2022 American College of Rheumatology/European Alliance of Associations for rheumatology classification criteria for granulomatosis with polyangiitis (2022)
Journal Article
Robson, J., Grayson, P., Ponte, C., Suppiah, R., Craven, A., Judge, A., …Luqmani, R. (2022). 2022 American College of Rheumatology/European Alliance of Associations for rheumatology classification criteria for granulomatosis with polyangiitis. Arthritis and Rheumatology, 74(3), 393-399. https://doi.org/10.1002/art.41986

Objective: To develop and validate revised classification criteria for granulomatosis with polyangiitis (GPA). Methods: Patients with vasculitis or comparator diseases were recruited into an international cohort. The study proceeded in five phases:... Read More about 2022 American College of Rheumatology/European Alliance of Associations for rheumatology classification criteria for granulomatosis with polyangiitis.

AB0834 Development of a conceptual framework for a patient reported outcome measure to capture patients’ perceptions of glucocorticoid therapy during treatment for rheumatic diseases (2021)
Journal Article
Bridgewater, S., Dawson, J., Ndosi, M., Black, R. J., Cheah, J. T. L., Dures, E., …Robson, J. (2021). AB0834 Development of a conceptual framework for a patient reported outcome measure to capture patients’ perceptions of glucocorticoid therapy during treatment for rheumatic diseases. https://doi.org/10.1136/annrheumdis-2021-eular.164

Patient perceptions of health-related quality of life in giant cell arteritis: International development of a disease-specific patient-reported outcome measure (2021)
Journal Article
Robson, J. C., Almeida, C., Dawson, J., Bromhead, A., Dures, E., Guly, C., …Hill, C. (2021). Patient perceptions of health-related quality of life in giant cell arteritis: International development of a disease-specific patient-reported outcome measure. Rheumatology, 60(10), 4671-4680. https://doi.org/10.1093/rheumatology/keab076

Objectives: GCA is a large vessel vasculitis (LVV) presenting with headache, jaw claudication, musculoskeletal and visual involvement. Current treatment is glucocorticoids and anti-IL-6 tocilizumab in refractory disease. The objective of this study w... Read More about Patient perceptions of health-related quality of life in giant cell arteritis: International development of a disease-specific patient-reported outcome measure.

Patient reported outcomes in large vessel vasculitides (2021)
Journal Article
Robson, J., Mackie, S., & Hill, C. (2021). Patient reported outcomes in large vessel vasculitides. Current Rheumatology Reports, 23(2), Article 7. https://doi.org/10.1007/s11926-020-00979-4

Purpose of Review: The goal of this paper is to review current and future uses of patient-reported outcomes in large vessel vasculitis. The large vessel vasculitides comprise Giant Cell Arteritis and Takayasu arteritis; both are types of systemic vas... Read More about Patient reported outcomes in large vessel vasculitides.

The patient perspective of nurse-led care in early rheumatoid arthritis: A systematic review of qualitative studies with thematic analysis (2020)
Journal Article
Sweeney, A. M. T., McCabe, C., Flurey, C. A., Robson, J. C., Berry, A., Richards, P., & Ndosi, M. (2021). The patient perspective of nurse-led care in early rheumatoid arthritis: A systematic review of qualitative studies with thematic analysis. Journal of Clinical Nursing, 30(1-2), 145-160. https://doi.org/10.1111/jocn.15531

Introduction: Management of rheumatoid arthritis has changed dramatically over the last decade and is characterised by early start of intensive treatment and tight monitoring of disease activity until remission. The role of nurse-led care at early... Read More about The patient perspective of nurse-led care in early rheumatoid arthritis: A systematic review of qualitative studies with thematic analysis.

Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals' perspectives (2020)
Journal Article
Austin, K., Robson, J. C., Shepherd, M., Harper, L., Ndosi, M., Flurey, C., …Dures, E. (2020). Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals' perspectives. Rheumatology Advances in Practice, 4(2), Article rkaa016. https://doi.org/10.1093/rap/rkaa016

© The Author(s) 2020. Objectives. CTD and systemic vasculitis impact on health-related quality of life. Treatment can be complex, involving multiple medical specialities. The aim of this study was to investigate psychological and self-management supp... Read More about Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals' perspectives.

Mixed methods study of clinicians' perspectives on barriers to implementation of treat to target in psoriatic arthritis (2020)
Journal Article
Dures, E., Taylor, J., Shepperd, S., Mukherjee, S., Robson, J., Vlaev, I., …Coates, L. C. (2020). Mixed methods study of clinicians' perspectives on barriers to implementation of treat to target in psoriatic arthritis. Annals of the Rheumatic Diseases, 79(8), 1031-1036. https://doi.org/10.1136/annrheumdis-2020-217301

Objectives: In treat to target (T2T), the patient is treated to reach and maintain specified and sequentially measured goals, such as remission or low disease activity. T2T in psoriatic arthritis (PsA) has demonstrated improved clinical and patient-r... Read More about Mixed methods study of clinicians' perspectives on barriers to implementation of treat to target in psoriatic arthritis.

Rituximab for maintenance of remission in ANCA-associated vasculitis: Expert consensus guidelines - Executive summary (2020)
Journal Article
Tieu, J., Smith, R., Basu, N., Brogan, P., D’Cruz, D., Dhaun, N., …Jayne, D. R. W. (2020). Rituximab for maintenance of remission in ANCA-associated vasculitis: Expert consensus guidelines - Executive summary. Rheumatology, 59(4), 727-731. https://doi.org/10.1093/rheumatology/kez632

© 2019 The Author(s) 2019. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. Anti-neutrophil cytoplasm antibody (ANCA)-associated vasculitis (AAV) encompasses three disease phenotypes: granul... Read More about Rituximab for maintenance of remission in ANCA-associated vasculitis: Expert consensus guidelines - Executive summary.

Treat-to-target in PsA: methods and necessity (2020)
Journal Article
Dures, E., Shepperd, S., Mukherjee, S., Robson, J., Vlaev, I., Walsh, N., & Coates, L. C. (2020). Treat-to-target in PsA: methods and necessity. RMD Open, 6(1), Article e001083. https://doi.org/10.1136/rmdopen-2019-001083

© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. With increasing recognition of the high burden and impact of psoriatic arthritis (PsA) and the growing numbe... Read More about Treat-to-target in PsA: methods and necessity.

Feasibility and face validity of outcome measures for use in future studies of Polymyalgia Rheumatica (PMR): An OMERACT Study (2020)
Journal Article
Owen, C. E., Goodman, S. M., Mackie, S. L., Simon, L. S., Hill, C. L., Yates, M., …Hill, C. L. (2020). Feasibility and face validity of outcome measures for use in future studies of Polymyalgia Rheumatica (PMR): An OMERACT Study. Journal of Rheumatology, 47(9), 1379-1384. https://doi.org/10.3899/jrheum.190575

OBJECTIVE: To survey participants with polymyalgia rheumatica (PMR) to evaluate the face validity, acceptability, and domain match of proposed candidate outcome measures. METHODS: A structured, online, anonymous survey was disseminated by patient sup... Read More about Feasibility and face validity of outcome measures for use in future studies of Polymyalgia Rheumatica (PMR): An OMERACT Study.

The patientsʼ perspective of important glucocorticoid effects: A nominal group study among patients with Systemic Lupus Erythematosus and Myositis (2020)
Journal Article
Mirza, S. Z., Cheah, J. T. L., Ghosh, N., Robson, J. C., Hill, C. L., Singh, J., …Goodman, S. M. (2021). The patientsʼ perspective of important glucocorticoid effects: A nominal group study among patients with Systemic Lupus Erythematosus and Myositis. JCR: Journal of Clinical Rheumatology, 27(6), 232-238. https://doi.org/10.1097/RHU.0000000000001313

Background/Objective The objective of this cohort study was to understand the positive and negative effects of glucocorticoids (GCs) in patients with systemic lupus erythematosus and myositis from the patients' perspective with the aim of developing... Read More about The patientsʼ perspective of important glucocorticoid effects: A nominal group study among patients with Systemic Lupus Erythematosus and Myositis.

Diagnostic assessment strategies and disease subsets in Giant Cell Arteritis: Data from an international observational cohort (2019)
Journal Article
Gribbons, K. B., Ponte, C., Craven, A., Robson, J. C., Suppiah, R., Luqmani, R., …Grayson, P. C. (2020). Diagnostic assessment strategies and disease subsets in Giant Cell Arteritis: Data from an international observational cohort. Arthritis and Rheumatology, 72(4), 667-676. https://doi.org/10.1002/art.41165

© 2019, American College of Rheumatology. This article has been contributed to by US Government employees and their work is in the public domain in the USA. Objective: Diagnostic assessment in giant cell arteritis (GCA) is rapidly changing as vascula... Read More about Diagnostic assessment strategies and disease subsets in Giant Cell Arteritis: Data from an international observational cohort.

Patterns of arterial disease in Takayasu's Arteritis and Giant Cell Arteritis (2019)
Journal Article
Maksimowicz-McKinnon, K., Gribbons, K. B., Ponte, C., Carette, S., Craven, A., Cuthbertson, D., …Grayson, P. C. (2020). Patterns of arterial disease in Takayasu's Arteritis and Giant Cell Arteritis. Arthritis Care and Research, 72(11), 1615-1624. https://doi.org/10.1002/acr.24055

Published 2019. This article is a U.S. Government work and is in the public domain in the USA. Objective: To identify and validate, using computer-driven methods, patterns of arterial disease in Takayasu arteritis (TAK) and giant cell arteritis (GCA)... Read More about Patterns of arterial disease in Takayasu's Arteritis and Giant Cell Arteritis.

Update on outcome measure development in large-vessel vasculitis: Report from OMERACT 2018 (2019)
Journal Article
Merkel, P. A., Direskeneli, H., Tugwell, P., Tómasson, G., Shea, B., Milman, N., …Hill, C. (2019). Update on outcome measure development in large-vessel vasculitis: Report from OMERACT 2018. Journal of Rheumatology, 46(9), 1198-1201. https://doi.org/10.3899/jrheum.181072

OBJECTIVE: The OMERACT Vasculitis Working Group seeks to develop validated outcome measures for use in trials for large-vessel vasculitis (LVV). METHODS: An international Delphi exercise conducted among investigators identified items considered... Read More about Update on outcome measure development in large-vessel vasculitis: Report from OMERACT 2018.

Feasibility and construct validation of the Patient Reported Outcomes Measurement Information System (PROMIS) in systemic vasculitis (2019)
Journal Article
Tomasson, G., Farrar, J. T., Cuthbertson, D., McAlear, C. A., Ashdown, S., Cronholm, P. F., …Merkel, P. A. (2019). Feasibility and construct validation of the Patient Reported Outcomes Measurement Information System (PROMIS) in systemic vasculitis. Journal of Rheumatology, 46(8), 928-934. https://doi.org/10.3899/jrheum.171405

OBJECTIVE: The Patient Reported Outcome Measurement Information System (PROMIS) is a collection of item banks of self-reported health. This study assessed the feasibility and construct validity of using PROMIS instruments in vasculitis. METHODS: Data... Read More about Feasibility and construct validation of the Patient Reported Outcomes Measurement Information System (PROMIS) in systemic vasculitis.

The OMERACT emerging leaders program: The good, the bad, and the future (2019)
Journal Article
Flurey, C. A., Tugwell, P. S., Black, R. J., Halls, S., Page, M. J., Robson, J. C., …Richards, B. (2019). The OMERACT emerging leaders program: The good, the bad, and the future. Journal of Rheumatology, 46(8), 1047-1052. https://doi.org/10.3899/jrheum.181126

The Journal of Rheumatology Copyright © 2019. All rights reserved. Objective. To describe the experience of the first OMERACT Emerging Leaders Program (ELP). Methods. A Delphi process identified positive aspects, areas for improvement, and future dir... Read More about The OMERACT emerging leaders program: The good, the bad, and the future.

Systemic vasculitis and patient-reported outcomes: How the assessment of patient preferences and perspectives could improve outcomes (2019)
Journal Article
Robson, J., Jayne, D., Merkel, P., & Dawson, J. (2019). Systemic vasculitis and patient-reported outcomes: How the assessment of patient preferences and perspectives could improve outcomes. Patient Related Outcome Measures, 10, 37-42. https://doi.org/10.2147/PROM.S163601

The systemic vasculitides are a group of multisystem diseases, which can be life and organ threatening. High-dose immunosuppressants are required to control inflammation in vital organs, such as the kidneys, lungs, skin, joints, and eyes. Patients re... Read More about Systemic vasculitis and patient-reported outcomes: How the assessment of patient preferences and perspectives could improve outcomes.

Updating OMERACT core set of domains for ANCA-associated vasculitis: Patient perspective using the international classification of function, disability, and health (2019)
Journal Article
Milman, N., McConville, E., Robson, J. C., Boonen, A., Tugwell, P., Wells, G. A., …Merkel, P. A. (2019). Updating OMERACT core set of domains for ANCA-associated vasculitis: Patient perspective using the international classification of function, disability, and health. Journal of Rheumatology, 46(10), 1415-1420. https://doi.org/10.3899/jrheum.181073

Objective: Aspects of ANCA-associated vasculitis (AAV) prioritized by patients with AAV were described using the International Classification of Function, Disability, and Health. Methods: Items identified during 14 individual interviews were incorpor... Read More about Updating OMERACT core set of domains for ANCA-associated vasculitis: Patient perspective using the international classification of function, disability, and health.

Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire (2018)
Journal Article
Robson, J. C., Dawson, J., Doll, H., Cronholm, P., Milman, N., Kellom, K., …Merkel, P. (2018). Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire. Annals of the Rheumatic Diseases, 77(8), 1158-1165. https://doi.org/10.1136/annrheumdis-2017-212713

© 2018 Article author(s). Objectives To finalise and validate a disease-specific patient-reported outcome (PRO) measure: The ANCA-associated vasculitis patient-reported outcome (AAV-PRO) questionnaire. Using a 35-item candidate questionnaire develope... Read More about Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire.

Health related quality of life in ANCA associated vasculitis and item generation for a disease specific patient reported outcome measure (2018)
Journal Article
Robson, J. C., Dawson, J., Cronholm, P., Milman, N., Kellom, K., Ashdown, S., …Merkel, P. (2018). Health related quality of life in ANCA associated vasculitis and item generation for a disease specific patient reported outcome measure. Patient Related Outcome Measures, 9, 17-34. https://doi.org/10.2147/PROM.S144992

ABSTRACT Objective: The anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are multisystem diseases of the small blood vessels. Patients experience irreversible damage and psychological effects from AAV and its treatment. An... Read More about Health related quality of life in ANCA associated vasculitis and item generation for a disease specific patient reported outcome measure.

Development of a core set of outcome measures for large-vessel vasculitis: Report from OMERACT 2016 (2017)
Journal Article
Sreih, A. G., Alibaz-Oner, F., Kermani, T. A., Aydin, S. Z., Cronholm, P. F., Davis, T., …Merkel, P. A. (2017). Development of a core set of outcome measures for large-vessel vasculitis: Report from OMERACT 2016. Journal of Rheumatology, 44(12), 1933-1937. https://doi.org/10.3899/jrheum.161467

Copyright © 2017. All rights reserved. Objective. Among the challenges in conducting clinical trials in large-vessel vasculitis (LVV), including both giant cell arteritis (GCA) and Takayasu arteritis (TA), is the lack of standardized and meaningful o... Read More about Development of a core set of outcome measures for large-vessel vasculitis: Report from OMERACT 2016.

Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis (2017)
Journal Article
Robson, J., Pauling, J. D., Domsic, R. T., Saketkoo, L. A., Almeida, C., Withey, J., …Hewlett, S. (2018). Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis. Arthritis Care and Research, 70(9), 1373-1384. https://doi.org/10.1002/acr.23475

© 2017, American College of Rheumatology Objective: Raynaud's phenomenon (RP) is the most common manifestation of systemic sclerosis (SSc). RP is an episodic phenomenon, not easily assessed in the clinic, leading to reliance on self-report. A thoroug... Read More about Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis.

Patient perceptions of glucocorticoids in anti-neutrophil cytoplasmic antibody-associated vasculitis (2017)
Journal Article
Shea, J. A., Kellom, K. S., Robson, J. C., Dawson, J., Cronholm, P. F., Ashdown, S., …Merkel, P. (2018). Patient perceptions of glucocorticoids in anti-neutrophil cytoplasmic antibody-associated vasculitis. Rheumatology International, 38(4), 675-682. https://doi.org/10.1007/s00296-017-3855-6

© 2017, The Author(s). Granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA), and eosinophilic granulomatosis with polyangiitis (EGPA) are multisystem diseases of small blood vessels, collectively known as the anti-neutrophil cytopla... Read More about Patient perceptions of glucocorticoids in anti-neutrophil cytoplasmic antibody-associated vasculitis.

A patient-reported outcome measure for effect of glucocorticoid therapy in adults with inflammatory diseases is needed: Report from the OMERACT 2016 special interest group (2017)
Journal Article
Black, R. J., Robson, J. C., Goodman, S. M., Hoon, E., Lai, L. Y., Simon, L. S., …Hill, C. L. (2017). A patient-reported outcome measure for effect of glucocorticoid therapy in adults with inflammatory diseases is needed: Report from the OMERACT 2016 special interest group. Journal of Rheumatology, 44(11), 1754-1758. https://doi.org/10.3899/jrheum.161083

Copyright © 2017. All rights reserved. Objective: The need for a standardized instrument to measure the effect of glucocorticoid (GC) therapy has been well documented in the literature. The aim of the first GC Special Interest Group was to define a r... Read More about A patient-reported outcome measure for effect of glucocorticoid therapy in adults with inflammatory diseases is needed: Report from the OMERACT 2016 special interest group.

OMERACT endorsement of patient-reported outcome instruments in antineutrophil cytoplasmic antibody-associated vasculitis (2017)
Journal Article
Robson, J. C., Tomasson, G., Milman, N., Ashdown, S., Boonen, A., Casey, G. C., …Merkel, P. A. (2017). OMERACT endorsement of patient-reported outcome instruments in antineutrophil cytoplasmic antibody-associated vasculitis. Journal of Rheumatology, 44(10), 1529-1535. https://doi.org/10.3899/jrheum.161139

© Copyright 2017 The Journal of Rheumatology. All rights reserved. Objective. The antineutrophil cytoplasmic antibody-associated vasculitides (AAV) are multiorgan diseases. Patients with AAV report impairment in their health-related quality of life (... Read More about OMERACT endorsement of patient-reported outcome instruments in antineutrophil cytoplasmic antibody-associated vasculitis.

Are the 1990 American College of Rheumatology vasculitis classification criteria still valid? (2017)
Journal Article
Seeliger, B., Sznajd, J., Robson, J. C., Judge, A., Craven, A., Grayson, P. C., …Luqmani, R. A. (2017). Are the 1990 American College of Rheumatology vasculitis classification criteria still valid?. Rheumatology, 56(7), 1154-1161. https://doi.org/10.1093/rheumatology/kex075

© The Author 2017. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. Objectives. Advances in diagnostic techniques have led to better distinction between types of vasculitis, potentially affe... Read More about Are the 1990 American College of Rheumatology vasculitis classification criteria still valid?.

The association of vascular risk factors with visual loss in giant cell arteritis (2016)
Journal Article
Robson, J., Yates, M., MacGregor, A. J., Robson, J. C., Craven, A., Merkel, P. A., …Watts, R. A. (2017). The association of vascular risk factors with visual loss in giant cell arteritis. Rheumatology, 56(4), 524-528. https://doi.org/10.1093/rheumatology/kew397

© The Author 2016. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. Objective. Blindness is a recognized complication of GCA; however, the frequency of and risk factors for this complication... Read More about The association of vascular risk factors with visual loss in giant cell arteritis.

Which patients with giant cell arteritis will develop cardiovascular or cerebrovascular disease? A clinical practice research datalink study (2016)
Journal Article
Robson, J. C., Kiran, A., Hamilton, W., Emin, A., Maskell, J., Hutchings, A., …Luqmani, R. (2016). Which patients with giant cell arteritis will develop cardiovascular or cerebrovascular disease? A clinical practice research datalink study. Journal of Rheumatology, 43(6), 1085-1092. https://doi.org/10.3899/jrheum.151024

Copyright © 2016. All rights reserved. Objective. To evaluate the risk of cerebrovascular disease and cardiovascular disease (CVD) in patients with giant cell arteritis (GCA), and to identify predictors. Methods. The UK Clinical Practice Research Dat... Read More about Which patients with giant cell arteritis will develop cardiovascular or cerebrovascular disease? A clinical practice research datalink study.

Update on outcome measure development for large vessel vasculitis: Report from OMERACT 12 (2015)
Journal Article
Merkel, P. A., Mackie, S. L., Aydin, S. Z., Direskeneli, H., Sreih, A., Alibaz-Oner, F., …Kamali, P. A. M. (2015). Update on outcome measure development for large vessel vasculitis: Report from OMERACT 12. Journal of Rheumatology, 42(12), 2465-2469. https://doi.org/10.3899/jrheum.141144

© Copyright 2015 The Journal of Rheumatology. All rights reserved. Objective. The rarity of large vessel vasculitis (LVV) is a major factor limiting randomized controlled trials in LVV, resulting in treatment choices in these diseases that are guided... Read More about Update on outcome measure development for large vessel vasculitis: Report from OMERACT 12.

Exploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT process (2015)
Journal Article
Robson, J. C., Milman, N., Tomasson, G., Dawson, J., Cronholm, P. F., Kellom, K., …Merkel, P. A. (2015). Exploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT process. Journal of Rheumatology, 42(11), 2204-2209. https://doi.org/10.3899/jrheum.141143

The Journal of Rheumatology Copyright © 2015. All rights reserved. Objective. Antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) is a group of linked multisystem life- and organ-threatening diseases. The Outcome Measures in Rheuma... Read More about Exploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT process.

Glucocorticoid treatment and damage in the anti-neutrophil cytoplasm antibody-associated vasculitides: Long-term data from the European Vasculitis Study Group trials (2014)
Journal Article
Höglund, P., Robson, J., Doll, H., Suppiah, R., Flossmann, O., Harper, L., …Luqmani, R. (2015). Glucocorticoid treatment and damage in the anti-neutrophil cytoplasm antibody-associated vasculitides: Long-term data from the European Vasculitis Study Group trials. Rheumatology, 54(3), 471-481. https://doi.org/10.1093/rheumatology/keu366

Objective. Granulomatosis with polyangiitis and microscopic polyangiitis are ANCA-associated vasculitides (AAVs). The Vasculitis Damage Index (VDI) quantifies damage. This study aims to determine the factors associated with long-term damage in the AA... Read More about Glucocorticoid treatment and damage in the anti-neutrophil cytoplasm antibody-associated vasculitides: Long-term data from the European Vasculitis Study Group trials.

Damage in the ANCA-associated vasculitides: Long-term data from the European Vasculitis Study Group (EUVAS) therapeutic trials (2013)
Journal Article
Robson, J., Doll, H., Suppiah, R., Flossmann, O., Harper, L., Höglund, P., …Luqmani, R. (2015). Damage in the ANCA-associated vasculitides: Long-term data from the European Vasculitis Study Group (EUVAS) therapeutic trials. Annals of the Rheumatic Diseases, 74(1), 177-184. https://doi.org/10.1136/annrheumdis-2013-203927

Objectives To describe short-term (up to 12 months) and long-term (up to 7 years) damage in patients with newly diagnosed antineutrophil-cytoplasm antibody-associated vasculitis (AAV). Methods Data were combined from six European Vasculitis Study... Read More about Damage in the ANCA-associated vasculitides: Long-term data from the European Vasculitis Study Group (EUVAS) therapeutic trials.

The relative risk of aortic aneurysm in patients with giant cell arteritis compared with the general population of the UK (2013)
Journal Article
Robson, J. C., Kiran, A., Maskell, J., Hutchings, A., Arden, N., Dasgupta, B., …Luqmani, R. A. (2015). The relative risk of aortic aneurysm in patients with giant cell arteritis compared with the general population of the UK. Annals of the Rheumatic Diseases, 74(1), 129-135. https://doi.org/10.1136/annrheumdis-2013-204113

Objectives: To evaluate the risk of aortic aneurysm in patients with giant cell arteritis (GCA) compared with age-, gender- and location-matched controls. Methods: A UK General Practice Research Database (GPRD) parallel cohort study of 6999 patien... Read More about The relative risk of aortic aneurysm in patients with giant cell arteritis compared with the general population of the UK.