Stakeholder endorsement advancing the implementation of a patient-reported domain for harms in rheumatology clinical trials: Outcome of the OMERACT Safety Working Group

Berthelsen, Dorthe B.; Simon, Lee S.; Ioannidis, John P.A.; Voshaar, Marieke; Richards, Pam; Goel, Niti; Strand, Vibeke; Nielsen, Sabrina M.; Shea, Beverly J.; Tugwell, Peter; Bartlett, Susan J.; Hazlewood, Glen S.; March, Lyn; Singh, Jasvinder A.; Suarez-Almazor, Maria E.; Boers, Maarten; Stevens, Randall M.; Furst, Daniel E.; Woodworth, Thasia; Leong, Amye; Brooks, Peter M.; Flurey, Caroline; Christensen, Robin

doi:10.1016/j.semarthrit.2023.152288

All Outputs (8)

“It means almost forgetting that you've got a disease”: An OMERACT study to define independence in the context of rheumatoid arthritis remission from the patient perspective (2024)
Journal Article

Aims
Our previous work identified pain, fatigue, and independence as missing from the ACR/EULAR rheumatoid arthritis (RA) remission criteria from the patient perspective. Validated measures exist for pain and fatigue, but not for independence. As a... Read More about “It means almost forgetting that you've got a disease”: An OMERACT study to define independence in the context of rheumatoid arthritis remission from the patient perspective.

Talking men's health: Understanding and supporting men with long-term conditions (2024)
Book

This book explores male health psychology in relation to chronic health conditions. Using data from men with rheumatic diseases as a starting point, this book draws on the wider literature to focus on how men talk about different aspects of living wi... Read More about Talking men's health: Understanding and supporting men with long-term conditions.

“I couldn't carry on taking a drug like that”: A qualitative study of patient perspectives on side effects from rheumatology drugs (2024)
Journal Article

Objectives There is growing interest in collecting outcome information directly from patients in clinical trials. This study evaluates what patients with rheumatic and musculoskeletal diseases (RMDs) consider important to know about symptomatic side... Read More about “I couldn't carry on taking a drug like that”: A qualitative study of patient perspectives on side effects from rheumatology drugs.

Associations of gender with sexual functioning, loneliness, depression, fatigue and physical function amongst patients suffering from rheumatoid arthritis with a particular focus on methotrexate usage (2024)
Journal Article

There is a lack of knowledge regarding methotrexate (MTX) usage in patients with rheumatoid arthritis (RA) and its possible links with gender, disease characterization and sexual functioning, loneliness, fatigue and depression. We, therefore, investi... Read More about Associations of gender with sexual functioning, loneliness, depression, fatigue and physical function amongst patients suffering from rheumatoid arthritis with a particular focus on methotrexate usage.

Patients' perspectives on systemic sclerosis-related Raynaud's phenomenon in the feet: A qualitative study from the OMERACT Foot and Ankle Working Group (2024)
Journal Article

To explore, from patients' perspectives, the symptoms and impact of Raynaud's phenomenon (RP) on the feet of patients with systemic sclerosis (SSc-RP), and to identify which foot-related domains are important to patients. Forty participants (34 women... Read More about Patients' perspectives on systemic sclerosis-related Raynaud's phenomenon in the feet: A qualitative study from the OMERACT Foot and Ankle Working Group.

‘Do I cry or just carry on’: A story completion study of healthcare professionals’ anticipated responses to experiencing chest pain (2024)
Journal Article

Healthcare professionals may experience barriers to seeking healthcare that differ from the general population. We explored healthcare professionals’ anticipated responses to experiencing chest pain following a period of stress using qualitative stor... Read More about ‘Do I cry or just carry on’: A story completion study of healthcare professionals’ anticipated responses to experiencing chest pain.

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.

Stakeholder endorsement advancing the implementation of a patient-reported domain for harms in rheumatology clinical trials: Outcome of the OMERACT Safety Working Group (2023)
Journal Article

Objectives: To develop an understanding of the concept of safety/harms experienced by patients involved in clinical trials for their rheumatic and musculoskeletal diseases (RMDs) and to seek input from the OMERACT community before moving forward to d... Read More about Stakeholder endorsement advancing the implementation of a patient-reported domain for harms in rheumatology clinical trials: Outcome of the OMERACT Safety Working Group.