Catherine A Sims, Brian Perry, Christine Yeung, Heather Tam, Joyce Kullman, Renée L Borchin, Cristina Burroughs, Peter A Merkel, Megan E B Clowse
{"title":"Exploring Reproductive Experiences With Women Enrolled in the International Vasculitis Pregnancy Registry.","authors":"Catherine A Sims, Brian Perry, Christine Yeung, Heather Tam, Joyce Kullman, Renée L Borchin, Cristina Burroughs, Peter A Merkel, Megan E B Clowse","doi":"10.3899/jrheum.2023-1055","DOIUrl":"10.3899/jrheum.2023-1055","url":null,"abstract":"<p><strong>Objective: </strong>This study explored the reproductive journeys of women with vasculitis, including their conversations with healthcare providers, disease activity, medication changes, and delivery experiences.</p><p><strong>Methods: </strong>Interviews were conducted with women registered in the Vasculitis Pregnancy Registry (VPREG), an online patient-reported registry of pregnant women with vasculitis. A team of physicians, patients, and qualitative researchers developed a qualitative interview guide. Participant responses were evaluated using thematic analysis.</p><p><strong>Results: </strong>Eighteen patients with vasculitis who had experienced pregnancy were interviewed (10 antineutrophil cytoplasmic antibody-associated vasculitis, 4 Takayasu arteritis, 2 Behçet disease, 1 IgA vasculitis, 1 relapsing polychondritis). Thematic analysis revealed common experiences in the decision-making process during pregnancy planning, including accessing information from multiple sources, communicating with medical professionals, and changing treatment for vasculitis. Women sought information about vasculitis and pregnancy from various sources, including social media; however, opinions from their physicians and family members were most influential. Patients were more likely than providers to initiate conversations regarding family planning. Balancing differing opinions from subspecialists was challenging as many patients recalled acting as a liaison between multiple physicians during pregnancy. The need for self-advocacy was a common experience among patients. Most women had pregnancies that resulted in live births with delivery at term.</p><p><strong>Conclusion: </strong>When making decisions about pregnancy, women of reproductive age with vasculitis used multiple resources. Patients consistently valued their medical provider's opinion over alternative sources of information. To ensure comprehensive medical care, half of women relied on self-advocacy to coordinate communication among subspecialists. Most women had pregnancies that resulted in live births with delivery at term.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141198958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Julie C McDonald, Laura Ross, Carolyn J Wicks, Jennifer A M Philip
{"title":"Examining the Case for Palliative Care in Patients With Systemic Sclerosis.","authors":"Julie C McDonald, Laura Ross, Carolyn J Wicks, Jennifer A M Philip","doi":"10.3899/jrheum.2023-1251","DOIUrl":"10.3899/jrheum.2023-1251","url":null,"abstract":"<p><p>Systemic sclerosis (SSc) is a complex, multiorgan disease that causes substantial and progressive symptoms and impairs quality of life. International guidelines recommend early, integrated palliative care for patients with advanced cardiopulmonary disease, such as heart failure and interstitial lung disease, as this care can improve patient, caregiver, and healthcare outcomes. In this article, we examine the potential need and role for palliative care in SSc. We propose that early, integrated palliative care could improve symptom control and quality of life and recommend a research agenda for palliative care in SSc to address the lack of evidence in this area.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141477843","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Arianna J Zhang, Lourdes M Perez-Chada, Vibeke Strand, April W Armstrong, Alice B Gottlieb, Joseph F Merola
{"title":"GRAPPA 2023 Annual Meeting Report: Hot Topic Session on Measurement of Musculoskeletal Symptoms in Psoriatic Disease.","authors":"Arianna J Zhang, Lourdes M Perez-Chada, Vibeke Strand, April W Armstrong, Alice B Gottlieb, Joseph F Merola","doi":"10.3899/jrheum.2024-0445","DOIUrl":"10.3899/jrheum.2024-0445","url":null,"abstract":"<p><p>During the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) 2023 annual meeting, the International Dermatology Outcome Measures (IDEOM) psoriatic disease (PsD) workgroup presented an update on their efforts toward measurement of musculoskeletal (MSK) symptoms in patients with PsD. Dr. Joseph Merola initiated the presentation emphasizing the vital importance of assessing MSK symptoms in patients with psoriasis (PsO) regardless of whether they have been diagnosed with psoriatic arthritis (PsA). He also discussed existing challenges for evaluating MSK symptoms in patients with PsO without a PsA diagnosis. Dr. Lourdes Perez-Chada then presented their work on the development and validation of the IDEOM Musculoskeletal Questionnaire (MSK-Q), a patient-reported questionnaire developed by the IDEOM to capture the intensity and impact of MSK symptoms on quality of life in patients with PsO with or without PsA. Dr. Perez-Chada also introduced a set of ongoing studies employing the IDEOM MSK-Q, highlighting the potential effects of the data collected through this innovative tool.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621615","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Denis Poddubnyy, Gary J Macfarlane, Oliver FitzGerald
{"title":"Introducing New GRAPPA Projects.","authors":"Denis Poddubnyy, Gary J Macfarlane, Oliver FitzGerald","doi":"10.3899/jrheum.2024-0261","DOIUrl":"10.3899/jrheum.2024-0261","url":null,"abstract":"<p><p>Every year at the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) annual meeting, new project ideas are presented and discussed with a view to obtaining feedback and support. Arising from previous work, a project proposal was presented at the 2023 meeting; the project aims to improve early diagnosis of psoriatic arthritis (PsA) by comparing a physician-based vs a patient questionnaire-based approach. This project has received the backing of the GRAPPA research committee, but additional funding will be required. A second project, approved by GRAPPA, was presented on delivering an epidemiology training module before the GRAPPA annual meeting in 2024, which will target both established GRAPPA clinicians and trainees. Attendance at such a module would enhance the quality of research in psoriatic disease.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621636","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"GRAPPA 2023 Debate: Is Psoriatic Disease Really a Primary Enthesitis That Drives Joint Synovitis? The Enthesitis Hypothesis 25 Years On.","authors":"Dennis McGonagle, Kerem Abacar, Bruce Kirkham","doi":"10.3899/jrheum.2024-0593","DOIUrl":"10.3899/jrheum.2024-0593","url":null,"abstract":"<p><p>The enthesitis hypothesis posits that enthesitis is a primary lesion and that inflammation at the enthesis initiates the musculoskeletal symptoms of psoriatic arthritis (PsA) and spondyloarthropathies (SpA). The hypothesis suggested that inflamed entheseal tissue near the synovium could trigger cytokine-mediated synovitis, that enthesis bone anchorage could explain osteitis, and that the location of entheses at the soft tissue interface could explain dactylitis. Advances in imaging techniques that allow better visualization of enthesitis lesions and the development of animal models have allowed evolution of the concept of enthesitis as a central mechanistic driver of musculoskeletal symptoms in PsA and SpA. A debate between Drs. Dennis McGonagle and Bruce Kirkham at the Group for Research on Psoriasis and Psoriatic Arthritis (GRAPPA) 2023 annual meeting discussed the data supporting and refuting this hypothesis in PsA and SpA, respectively. The major points of this debate are summarized in this article.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141876544","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Debate at the GRAPPA 2023 Annual Meeting: Should Methotrexate Be the First Systemic Therapy in Psoriatic Disease?","authors":"Arianna J Zhang, Joseph F Merola, William Tillett","doi":"10.3899/jrheum.2024-0317","DOIUrl":"10.3899/jrheum.2024-0317","url":null,"abstract":"<p><p>Despite substantial evidence that methotrexate (MTX) has inferior efficacy, safety, and tolerability compared to newer systemic therapies, MTX remains one of the most commonly prescribed first-line systemic therapies for psoriatic arthritis worldwide and for psoriasis in some countries. At the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) 2023 annual meeting in Dublin, Ireland, Drs. William Tillett and Joseph Merola engaged in debate over whether MTX should be the first systemic therapy used in psoriatic disease (PsD). Each presented evidence-based arguments, incorporating multiple data sources, including clinical trials, in support for and against MTX's status as first-line systemic therapy for PsD. This article summarizes their debate for the broader PsD community.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621613","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Margot Van Mechelen, Siba P Raychaudhuri, Smriti K Raychaudhuri, Kurt de Vlam
{"title":"GRAPPA 2023 Basic Science Workshop: What to Expect From Animal Models for Psoriatic Arthritis and Psoriasis.","authors":"Margot Van Mechelen, Siba P Raychaudhuri, Smriti K Raychaudhuri, Kurt de Vlam","doi":"10.3899/jrheum.2024-0258","DOIUrl":"10.3899/jrheum.2024-0258","url":null,"abstract":"<p><p>Animal models help to drive research into psoriasis and psoriatic arthritis (PsA), particularly when studies in humans are not feasible. There are no animal models that perfectly mimic psoriatic disease (PsD) and so the pros and cons of each existing model must be considered for appropriate experimental design. Roughly, the existing animal models for PsD can be divided into 4 categories: (1) spontaneous models, (2) transgenic models, (3) inducible models, and (4) xenotransplantation models. Animal models in PsD are extremely important for dissecting and understanding molecular mechanisms of the disease process and for developing novel drugs. Animal models remain highly valuable for research in PsD in 2 scenarios. The first scenario is when complex interventions or analyses are required that are not feasible in humans due to technical, safety, or economic reasons. The second is when well-controlled study environments are required, such as dietary modifications, that would be challenging in humans. This topic was presented as part of the basic science workshops during the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) 2023 annual meeting.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621616","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Gizem Ayan, Sibel Z Aydin, Laura C Coates, Lihi Eder, Dafna D Gladman, Philip S Helliwell, Gurjit S Kaeley, Arthur Kavanaugh, Philip J Mease, Stephen R Pennington, Fabian Proft, Enrique R Soriano, Oliver FitzGerald
{"title":"GRAPPA 2023: Major Projects, Key Advances, and Milestones.","authors":"Gizem Ayan, Sibel Z Aydin, Laura C Coates, Lihi Eder, Dafna D Gladman, Philip S Helliwell, Gurjit S Kaeley, Arthur Kavanaugh, Philip J Mease, Stephen R Pennington, Fabian Proft, Enrique R Soriano, Oliver FitzGerald","doi":"10.3899/jrheum.2024-0266","DOIUrl":"10.3899/jrheum.2024-0266","url":null,"abstract":"<p><p>At the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) 2023 annual meeting, members were updated on a number of ongoing activities during the key project update session. These activities included the Axial Involvement in Psoriatic Arthritis (AXIS) cohort, the Axial Psoriatic Arthritis Molecular and Clinical Characterization study, the Diagnostic Ultrasound Enthesitis Tool (DUET) study, the Sex- and Gender-Based Analysis of the Effectiveness of Advanced Therapies in Psoriatic Arthritis (SAGE-PsA) study, the Health Initiatives in Psoriasis and Psoriatic Arthritis Consortium European States (HIPPOCRATES), the GRAPPA slide library, and the GRAPPA treatment recommendations.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621631","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Dafna D Gladman, Oliver FitzGerald, April W Armstrong, Niti Goel, Alice B Gottlieb
{"title":"Prologue: Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) 2023 Annual Meeting.","authors":"Dafna D Gladman, Oliver FitzGerald, April W Armstrong, Niti Goel, Alice B Gottlieb","doi":"10.3899/jrheum.2024-0548","DOIUrl":"10.3899/jrheum.2024-0548","url":null,"abstract":"<p><p>The Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) 2023 annual meeting was held on July 13 to 15, 2023, in Dublin, Ireland, and was attended by 285 rheumatologists, dermatologists, trainees, patient research partners (PRPs), representatives of patient organizations, and industry partners. The 20th anniversary of GRAPPA was celebrated with a special presentation and archival video. Ahead of the meeting, the PRP Network met, a workshop was held by the International Dermatology Outcome Measures (IDEOM) group, and there was a workshop in which researchers discussed advancing ultrasound use to improve the management of psoriatic disease (PsD). Young-GRAPPA also held a workshop and business meeting. Multiple presentations highlighted important topics currently influencing PsD, including ensuring that patients are included in advancing research, the role of depression in PsD, the use of magnetic resonance imaging for spinal lesions, and animal models of PsD, among others. Debates focused on whether biologics should be used for mild psoriasis, whether methotrexate should remain the first-line treatment for PsD, and whether PsD is really a primary enthesitis driving joint synovitis. Here we provide an overview of the features of the GRAPPA 2023 annual meeting and introduce the manuscripts published together in this supplement as a meeting report.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621637","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mikkel Østergaard, Signe Møller-Bisgaard, Walter P Maksymowych
{"title":"Spinal Lesions in Axial Psoriatic Disease: How Should They Be Identified and Quantified by Magnetic Resonance Imaging?","authors":"Mikkel Østergaard, Signe Møller-Bisgaard, Walter P Maksymowych","doi":"10.3899/jrheum.2024-0291","DOIUrl":"10.3899/jrheum.2024-0291","url":null,"abstract":"<p><p>Proper assessment of patients with psoriatic arthritis (PsA) requires assessment of all disease domains, including axial disease. Magnetic resonance imaging (MRI) is the method of choice for evaluating axial involvement in PsA. When assessing patients with PsA for spinal involvement, it is important to assess both vertebral body lesions and posterolateral lesions, such as inflammation in facet joints and costovertebral joints, and enthesitis at spinous and transverse processes. The Canada-Denmark (CanDen) assessment system for spine MRIs is the preferred method for detailed evaluation of inflammation and structural damage at various anatomical locations in the spine, and it is reproducible and sensitive to change. The Assessment of Spondyloarthritis international Society (ASAS) has recently published MRI definitions of inflammatory and structural lesions in the spine, incorporating the CanDen definitions of spinal lesions on MRI. Applying the ASAS definitions and the CanDen assessment system in clinical practice and trials is recommended. Ongoing research/studies, not least the Axial Involvement in Psoriatic Arthritis (AXIS) study, may provide a data-driven definition of axial involvement in PsA. Ongoing research is expected to further improve and validate assessment tools for axial PsA and to provide a much-needed data-driven consensus-based definition of axial involvement in PsA.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621639","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}