Collecting Beneficial Clinical Data for Juvenile Idiopathic Arthritis

Although data collection is notoriously difficult in juvenile idiopathic arthritis (JIA), when systems are put in place, patients and families readily accept them.

A team, led by Dr Flora McErlane, Pediatric Rheumatology, Great North Children’s Hospital, Newcastle Hospitals NHS Foundation Trust, reviewed the feasibility and acceptability data reported by patients and clinicians for pediatric patients with juvenile arthritis idiopathic.

Difficulty finding data

Currently, a large portion of pediatric JIA patients do not achieve inactive disease within the first 2 years of diagnosis.

Because juvenile idiopathic arthritis is a heterogeneous group of diseases with many variations between the different International League for Arthritis and Rheumatism (ILAR) subtypes, the majority of evidence comes from clinical research and not real clinical practice.

Moreover, it is known that early aggressive treatment could result in a relatively large number of pediatric patients with polyarticular JIA with clinically inactive disease after 6 months.

“Improvements in clinical care pathways have the potential to improve clinical outcomes, but the lack of consistent and contemporary clinical data currently prevents setting standards and implementing meaningful quality improvement programs” , wrote the authors.

Paper and electronic data collection

In the study, researchers identified findings from the CAPTURE-JIA dataset and adopted a multi-phase, mixed-methods approach to enable prospective collection of quantitative data to examine collection feasibility and efficiency. datasets and qualitative data informing the context and processes of implementation. .

The team used an initial paper pilot to inform the design of a bespoke electronic data collection system called the Agileware system, with a later electronic pilot also informing the final CAPTURE-JIA data collection tool.

Phase 1 paper-based pilot data included 121 patients with juvenile idiopathic arthritis.


The result shows that paper data collection was feasible. However, the main problem with this system is that it ultimately takes time.

A trio of themes emerged in problematic data elements, where 14 of 62 data elements have more than 40% missing data, the formatting of data collection forms, and a need highlighted by clinicians for data collection. digital data, and informing the development of phase 2 electronic data collection tools.

However, patients and families supported data collection and analysis of anonymized patient data to inform clinical care.

No preference was reported by families for paper-based data collection over electronic data collection.

The phase 3 electronic pilot data cohort included 38 patients. Participants said this system was comprehensive and easy to use.

The investigators also confirmed that the 11 National Juvenile Idiopathic Audit questions were answerable following an analysis of the study dataset and a mock longitudinal dataset.

“CAPTURE-JIA multicenter data collection is feasible and acceptable, with a bespoke data collection system presented as the most satisfactory solution,” the authors wrote. “The study informs ongoing work toward a streamlined and flexible national pediatric data collection system to support improved quality of clinical care.”

The study, “Quality Improvement in Juvenile Idiopathic Arthritis: A Pilot Mixed-Method Implementation of the CAPTURE-JIA Dataset,” was published online in Pediatric rheumatology.

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