Clinical Data Collection Beneficial for Juvenile Idiopathic Arthritis

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A high percentage of pediatric patients with JIA do not achieve inactive disease during the first 2 years following diagnosis.

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

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

Difficulty Finding Data

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

Because juvenile idiopathic arthritis is a heterogeneous group of diseases with a lot of variation between different International League for Arthritis and Rheumatism (ILAR) subtypes, the majority of data is derived from clinical research and not from real-world clinical practices.

In addition, it is known that early aggressive therapy could result in a relatively high number of pediatric patients with polyarticular JIA achieving clinically inactive disease by 6 months.

“Refinements to clinical care pathways have the potential to improve clinical outcomes but a lack of consistent and contemporaneous clinical data presently precludes standard setting and implementation of meaningful quality improvement programs,” the authors wrote.

Paper and Electronic Data Collection

In the study, the investigators identified outcomes from the CAPTURE-JIA dataset and took a multiphase mixed-methods approach to enable the prospective collection of quantitative data to examine the feasibility and efficacy of dataset collection and of 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 subsequent electronic pilot also informing the final CAPTURE-JIA data collection tool.

The phase 1 paper pilot data included 121 patients with juvenile idiopathic arthritis.


The result show the paper collection of paper data was feasible. However, the main issue with this system is that it is ultimately time consuming.

A trio of themes did emerge in problematic data items, where 14 of 62 data items receive greater than 40% missing data, formatting of data collection forms and a clinician-highlighted need for digital data collection, and informing phase 2 electronic data collection tool development.

However, both patients and families were supportive of collecting the data and the analysis of anonymized patient data to inform clinical care.

There was no preference reported by families on paper data collection compared to electronic data collection.

The phase 3 electronic pilot data cohort included 38 patients. The participants reported this system as complete and easy to use.

The investigators also confirmed that all 11 juvenile idiopathic national audit questions can be answered following an analysis of the study dataset and a dummy longitudinal dataset.

“Multicenter CAPTURE-JIA data collection is feasible and acceptable, with a bespoke data collection system highlighted as the most satisfactory solution,” the authors wrote. “The study is informing ongoing work towards a streamlined and flexible national pediatric data collection system to drive quality improvement in clinical care.”

The study, “Quality improvement in juvenile idiopathic arthritis: a mixed-methods implementation pilot of the CAPTURE-JIA dataset,” was published online in Pediatric Rheumatology.