Jo Robson's Outputs (65)

Feasibility and face validity of outcome measures for use in future studies of Polymyalgia Rheumatica (PMR): An OMERACT Study (2020)
Journal Article

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

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

© 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

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

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.

The OMERACT emerging leaders program: The good, the bad, and the future (2019)
Journal Article

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.

Feasibility and construct validation of the Patient Reported Outcomes Measurement Information System (PROMIS) in systemic vasculitis (2019)
Journal Article

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.

Systemic vasculitis and patient-reported outcomes: How the assessment of patient preferences and perspectives could improve outcomes (2019)
Journal Article

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

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

© 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

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

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

© 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

© 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

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

© 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

© 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 global burden of anti-neutrophil cytoplasmic antibody vasculitis (2016)
Journal Article

The global burden of anti-neutrophil cytoplasmic antibody vasculitis is high but currently unquantified

The association of vascular risk factors with visual loss in giant cell arteritis (2016)
Journal Article

© 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

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.