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Patient reported outcomes in large vessel vasculitides (2020)
Journal Article
Robson, J., Mackie, S., & Hill, C. (in press). Patient reported outcomes in large vessel vasculitides. Current Rheumatology Reports,

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 v... 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. (in press). The patient perspective of nurse-led care in early rheumatoid arthritis: A systematic review of qualitative studies with thematic analysis. Journal of Clinical Nursing, 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), 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), 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. (in press). The patientsʼ perspective of important glucocorticoid effects: A nominal group study among patients with Systemic Lupus Erythematosus and Myositis. JCR: Journal of Clinical Rheumatology, 1. https://doi.org/10.1097/RHU.0000000000001313

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.