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Objective. Improving the assessment of psoriatic arthritis (PsA) is a key purpose of the Group for Research and Assessment of Psoriasis and PsA (GRAPPA). Herein, we report the proceedings of the GRAPPA composites workshop at the 2019 GRAPPA annual meeting and the membership’s recommended next steps. Methods. A review of continuous composite measures was conducted in an introductory workshop, followed by 10 breakout group sessions and a final plenary session for feedback and voting. Results. Participants included 154 members: 87 rheumatologists, 18 dermatologists, 2 rheumatologist/dermatologists, 12 patient research partners, 14 academics, 1 methodologist, and 20 industry members. Of voting members, 88.8% agreed a need exists for a continuous composite measure for routine practice, but only 62% were currently using a composite measure. Of these, 27% were using the 28-joint count Disease Activity Score (DAS), which is not a PsA-specific measure; 20% were using a PsA-specific measure such as PsA DAS (PASDAS), Composite Psoriatic Disease Activity Index (CPDAI), or Disease Activity Index for PsA (DAPSA). Members agreed that the existing measures were not feasible in their current forms (CPDAI 83%, PASDAS 82%, and DAPSA 47%) and that modification should be tested. The majority (76%) agreed that disease effect should be measured separately from disease activity. Conclusion. The GRAPPA membership supports the need for a continuous composite measure of disease activity for use in routine clinical care, the separate measurement of disease effect and activity, and the testing of modifications to candidate instruments rather than the development of new measures.

ObjectiveEvaluation of a psoriatic arthritis (PsA), multidimensional, patient-completed disease flare questionnaire (FLARE).MethodsThe FLARE questionnaire was administered to 139 patients in a prospective observational study. The “gold standard” of flare was based on patient opinion. Test-retest reliability was evaluated by intraclass correlation coefficient (ICC). Disease activity was measured by the Psoriatic Arthritis Disease Activity Score (PASDAS), Group for Research and Assessment of Psoriasis and PsA (GRAPPA) Composite Exercise (GRACE), Composite Psoriatic Disease Activity Index (CPDAI), and Disease Activity Index for Psoriatic Arthritis (DAPSA).ResultsThe most common symptoms of a PsA flare were musculoskeletal, followed by fatigue, frustration, loss of function, and an increase in cutaneous symptoms. The test-retest ICC for the FLARE questionnaire was 0.87 (95% CI 0.72–0.94). The optimum cut-off to identify a flare of disease was 4/10 (sensitivity 0.82, specificity 0.76; area under the curve 0.85). For those patients scoring ≥ 4, the mean score for the composite measures was as follows (score for those not reporting a flare in parentheses): PASDAS 5.3 ± 1.3 (3.1 ± 1.6); GRACE 4.5 ± 1.2 (2.2 ± 1.4); CPDAI 8.9 ± 2.5 (4.7 ± 3.1); and DAPSA 38.2 ± 20.3 (16.8 ± 14.9). In a new flare, the increase in composite measure score was calculated as follows: 1 for PASDAS and GRACE, 2 for CPDAI, and 7 for DAPSA. Agreement between the definition of flare using the cut-off of 4 from the questionnaire, and that indicated by the subject in a separate, standalone question was 0.57 (Cohen κ).ConclusionA PsA flare displays escalation of symptoms and signs across multiple domains. The FLARE questionnaire has external validity in terms of both composite disease activity and overall patient opinion about the state of their condition.

At the 2016 annual meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), the treatment recommendations committee summarized its work and presented its plans for future updates. The committee announced a partnership between GRAPPA and Guideline Central to develop a pocket reference guide to the treatment recommendations. Because key new data appear regularly, the group discussed publishing periodic updates of the recommendations online through the GRAPPA Website as well as a goal of publishing another major update of the recommendations in 2020. The committee also announced that 2 GRAPPA members were awarded a grant from the International League of Associations for Rheumatology to look at potential adaptations of international treatment recommendations for resource-poor settings, particularly in South America and Africa.

Objectives PsA is an inflammatory condition that can cause pain, fatigue, swelling and joint stiffness. The consequences include impaired physical function, a high psychosocial burden, reduced quality of life and work disability. The presenting symptoms can be non-specific and varied, leading to delays in diagnosis or referral to specialist teams. The aim of this study was to explore patients' experiences of being diagnosed and the initial management of PsA. Methods The study used a qualitative design, with data collected in one-to-one, face-to-face semi-structured interviews. Results Fifteen newly diagnosed patients ( Conclusion Participants were already dealing with functional limitations and were highly distressed and anxious by the time they received their diagnosis. Physical and mental outcomes could be improved by the implementation of existing psoriasis management guidelines and strategies for earlier referral from primary care to rheumatology and by the development of guidelines on educational, self-management and psychological support provision soon after diagnosis.

In 2016, members of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) published their updated Treatment Recommendations for Psoriatic Arthritis. This paper describes how a patient-oriented guide to those treatment recommendations was developed by GRAPPA’s patient research partners (PRP). We describe how the PRP developed a process for creating and implementing the guide. We also describe how we evaluated the diversity of the guide’s potential patient audience, i.e., where each individual was in their diagnosis and treatment needs, and how we made the patient guide attractive, readable, and available to as broad a patient audience as possible.

Psoriatic arthritis (PsA) is a heterogeneous inflammatory arthritis with a varied clinical phenotype. There has been considerable international collaboration over recent years to develop and prioritise appropriate disease domains and outcome measures to capture all aspects of this complex disease. It has been recognised that patient-reported measures and physician assessments are complementary and, when used together, allow an improved reflection of disease burden. Taking this concept one step further, the experience in rheumatoid arthritis has demonstrated benefits of incorporating the patient perspective in the development of outcome measures. We report a systematic review demonstrating (1) that there has been little incorporation of the patient perspective in the development of outcome measures and domains in PsA, (2) the proceedings from the preliminary patient involvement in outcome measures for PsA (PIOMPSA) meetings, and (3) a proposed roadmap for improving patient involvement.