All Outputs (57)

Patients’ experiences of managing their rare rheumatic disease (2025)
Journal Article

Objectives
The rare autoimmune rheumatic diseases (RAIRDs) include systemic lupus erythematosus (lupus), systemic vasculitis, inflammatory myositis, systemic sclerosis, and Sjögren’s Disease. The objective of the study is to understand patients’ exp... Read More about Patients’ experiences of managing their rare rheumatic disease.

Patient perspectives on the impact of appearance and weight changes attributed to systemic glucocorticoid treatment of rheumatic diseases (2025)
Journal Article

Objectives To explore patients’ perspectives on the impact of appearance changes attributed to glucocorticoid treatment. Methods We conducted a secondary inductive thematic analysis of the ‘Steroid PRO’ semi-structured interviews with patients with r... Read More about Patient perspectives on the impact of appearance and weight changes attributed to systemic glucocorticoid treatment of rheumatic diseases.

Impact of glucocorticoids on patients’ quality of life: A qualitative study assessing face validity and feasibility of the Steroid PRO in patients with inflammatory gastroenterology, respiratory and dermatology conditions (2025)
Journal Article

Objectives The Steroid PRO is a treatment-specific patient-reported outcome questionnaire which measures the impact of glucocorticoids on health-related quality of life. It has 15 items grouped into 4 domains (Social impact, Impact on Appearance, Psy... Read More about Impact of glucocorticoids on patients’ quality of life: A qualitative study assessing face validity and feasibility of the Steroid PRO in patients with inflammatory gastroenterology, respiratory and dermatology conditions.

Qualitative interview study of rheumatology patients’ experiences of COVID-19 shielding to explore the physical and psychological impact and identify associated support needs (2024)
Journal Article

Objective: Many clinically extremely vulnerable rheumatology patients have only recently ceased shielding from COVID-19, while some continue to minimise in-person contact. The objective of this study was to understand the impact of shielding and asso... Read More about Qualitative interview study of rheumatology patients’ experiences of COVID-19 shielding to explore the physical and psychological impact and identify associated support needs.

Stroke frequency, associated factors, and clinical features in primary systemic vasculitis: A multicentric observational study (2024)
Journal Article

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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.

P289 The effectiveness of interventions to reduce psychological distress in patients with autoimmune rheumatic conditions: A systematic review of effectiveness (2022)
Journal Article

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 granulomatosis with polyangiitis (2022)
Journal Article

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.