Background/Purpose: Psoriatic arthritis (PsA) is a multidimensional inflammatory disease for which multiple outcome measures can be used, to assess disease activity e.g. through composite scores, and to assess other aspects of disease such as patient-reported outcomes (PROs)[1]. In trials, outcome measures were varied in 2012, as evidenced in a systematic literature review [2]. Since 2012, much work has been performed on outcome measures in PsA [3]. Furthermore, registries reflect more closely real-world data than trials.

The purpose of this study was to assess outcome measures collected in ongoing PsA registries or longitudinal cohorts, through a systematic literature review.

Methods: We performed a systematic literature review in Pubmed Medline (PROSPERO CRD42020175745) to identify all studies reporting either registries or longitudinal cohorts in PsA, published between 2010 and March 2020. Registries centered on drugs or not centered on PsA (e.g., reporting outcomes for several rheumatic diseases), trials and long term extension studies were excluded. The registry principal investigators were contacted by email as needed. All publications for a single registry were analyzed together. The data collection comprised the clinical outcome measures reported, and patient characteristics, based on the largest published population for a given registry. Outcomes were classified as disease activity scores, assessments for the different domains of PsA [3], or PROs. The analysis was descriptive.

Results: Of 673 articles, 73 were relevant for analysis, corresponding to 27 registries or PsA-specific cohorts. The overall number of patients was 16,183 with a mean of 599 per study (Table 1). Overall, 51% were men, weighted mean age was 49.7±9.3 years and weighted mean disease duration was 6.8±0.2 years. Most of the studies (78%) were performed in Europe or the United States.

Overall, 58 different clinical outcome measures were collected. Disease activity composite scores were used in 20 registries (74%): of these, 41% reported Minimal Disease Activity, 33% DAS28 and 30% DAPSA (Figure 1). Regarding the different domains of PsA, joint involvement was reported in 96% (using variable joint counts, most frequently the 66/68 joint count, in 85%) and 93% of the registries reported skin psoriasis (most frequently through PASI, in 72%), whereas enthesitis, dactylitis and axial involvement were less often reported, also using variables outcome measures (Figure 1). Among PROs, 96% of the registries reported HAQ, and the other frequently reported PROs were patient global assessment and pain (Figure 1).

Conclusion: Data collection in PsA is very heterogeneous, reflecting the lack of international consensus on outcome measures. Experts need to define a core set of feasible and practical outcome measures for the clinical follow up with patients with PsA.

References

1          Orbai A-M et al. J Rheumatol 2017;44:1522–8.

2          Palominos PE et al. Arthritis Care Res 2012;64:397–406.

3          Orbai A-M et al. Ann Rheum Dis 2017;76:673–80.

Table 1. Description of 27 ongoing PsA registries or PsA cohorts

Figure 1. Outcomes reported in 27 PsA cohorts and registries. AMDF: Arithmetic Mean of the Desirability Function ; ACR response: American College of Rheumatology response; BASDAI: Bath Ankylosing Spondylitis Disease Activity Index; CPDAI: Composite Psoriatic Disease Activity Index; DAS28: Disease Activity Score 28; HAQ: Health assessment Questionnaire; PASDAS: Psoriatic Arthritis Disease Activity Score; PASI: Psoriasis Area Severity Index; PGA: Patient’s global assessment; PsArC: Psoriatic Arthritis Response Criteria; VLDA: Very Low Disease Activity

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/outcome-measures-in-psoriatic-arthritis-registries-are-very-heterogeneous-a-systematic-literature-review-of-27-registries-or-16183-patients/