Recording of non-musculoskeletal manifestations, comorbidities and safety outcomes in European spondyloarthritis registries: a survey

Abstract

Objectives: Real-world evidence is needed to inform treatment strategies for patients with PsA and axial SpA (axSpA) who have non-musculoskeletal manifestations (NMMs), various risk factors and comorbidities. International collaboration is required to ensure statistical power and to enhance generalizability. The first step forward is identifying which data are currently being collected. Across 17 registries participating in the European Spondyloarthritis Research Collaboration (EuroSpA), we aimed to map recording practices for NMMs, comorbidities and safety outcomes in patients with PsA and axSpA.

Methods: Through a survey with 4,420 questionnaire items, we explored the recording practices of 58 pre-defined conditions (i.e. NMMs, comorbidities and safety outcomes) covering 10 disease areas. In all registries we mapped for each condition whether it was recorded, the recording procedure and the potential to identify it through linkage to other national registries.

Results: Conditions were generally recorded at entry into the registry and clinical follow-up visits using a pre-specified list or a coding system. Most registries recorded conditions within the following disease areas: NMMs (number of registries, n = 15-16), cardiovascular diseases (n = 10-14), gastrointestinal diseases (n = 12-13), infections (n = 10-13) and death (n = 14). Nordic countries had the potential for data linkage and generally had limited recording of conditions in their registry, while other countries had comprehensive recording practices.

Conclusion: A wide range of conditions were consistently recorded across the registries. The recording practices of many conditions and disease areas were comparable across the registries. Our findings support the potential for future collaborative research.

Keywords: DMARDs; JAK inhibitors; biological therapies; comorbidity; multimorbidity; routinely collected data; spondyloarthritis.

Graphical Abstract

Figure 1.

Conditions possible to record in each registry, sorted by disease area. Whether it is possible to record a condition, yes: ✓, no: empty. The total number of registries recording the condition is shown in the right column, ranging from yellow (number of registries, n ≤ 6) to light green (n = 7–10) to dark green (n ≥ 11). The total number of conditions recorded in each registry is shown at the bottom of the figure. resp: respiratory

Figure 2.

Different aspects of the recording procedures for the conditions. Colour-coded figure ranging from yellow (number of registries, n ≤ 6) to light green (n = 7–10) to dark green (n ≥ 11) with the total number of registries for the type of recording system used, the time points and frequency for recording, the dates related to the recorded condition and who recorded the condition. The exact numbers for each registry can be found in Supplementary Figs S2–S4, available at Rheumatology Advances in Practice online

Figure 3.

Potentially recorded serious adverse events in each registry

Figure 4.

European maps of the total number of conditions recorded or obtained through linkage to other national registries. (A) The number of the 58 conditions that could be directly recorded in each European SpA registry. (B) The number of conditions that could be obtained through linkage to other national registries after relevant legal and/or ethical permits. The exact numbers for each registry/country can be found in Fig. 1 and Supplementary Fig. S1, available at Rheumatology Advances in Practice online