Table 1 The CAPTURE-JIA quality of care dataset

Demographic data

1.1 NHS number of patient

All

1.2 Date of attendance / visit date

All

2.1 Gender

First

2.2 Date of birth

First

2.3 Ethnicity

First

Clinical history data (diagnosis and disease features)

6.1 Date of symptom onset

First

6.2 ILAR sub-type

First/Clinically indicated

6.3 Date of diagnosis

First/Clinically indicated

6.4 Relevant co-morbidities

First/Clinically indicated

6.5 Morning stiffness of joints

All

6.7.A Systemic features

First/Clinically indicated

6.7.B Systemic JIA Global Assessment

First/Clinically indicated

6.8.A Uveitis history

All

6.8.B Uveitis status at most recent eye examination

All

Medication data

7.1 Medication name

All

7.2.A Date of decision to treat or change treatment

All

7.2.B Date treatment started / date of single treatment

All

7.3 Dose

All

7.4 Frequency

All

7.5 Route

All

7.6 Date medication stopped or changed

All

7.7 Reason for stopping or changing medication

All

7.8 Joints injected with intra-articular steroids

All

7.9 Adverse drug reactions

All

Examination data

3.1 Height

All

3.2 Weight

All

6.6 Leg length discrepancy

First/Clinically indicated

COV / patient reported data

4.1.A Active joint assessment

All

4.1.B Swollen joint assessment

All

4.1.C Tender joint assessment

All

4.2 Limited joint assessment

All

4.3 Physician Global Assessment

All

4.4 Patient / Parent Global Assessment of overall well-being

All

4.5.A CHAQ / HAQ (final numeric score)

All

4.5.B CHAQ multiple choice questions

All

4.5.C CHAQ yes/no questions

All

8.10 Date form completed (CHAQ/PREM/PROM)

All

8.11 Form type (patient or parent) (CHAQ/PREM/PROM)

All

8.12 Completed by (CHAQ/PREM/PROM)

All

8.13 Time taken to complete form (CHAQ/PREM/PROM)

All

8.14 JIA-specific patient reported experience measure (PREM)

All

8.15 JIA-specific patient reported outcome measure (PROM)

All

Once only lab data

5.1 RF +/−

First/Clinically indicated

5.2 HLA B27 +/−

Once if indicated

5.3 ANA +/−

First/Clinically indicated

Structure of the care team

Quality of care data

8.1 Date of referral letter being received in rheumatology department

First

8.2.A Date of first appointment offered in a rheumatology clinic

First

8.2.B Date of first appointment in a rheumatology clinic

8.3 Does steroid injection specify a dedicated Paediatric GA list?

All

8.4 Date of first eye screen

All

8.5 Date patient was counselled before starting methotrexate

All

8.6 Date patient was counselled before starting a biologic

All

8.7 Clinic type / organisation

All

8.8.A Is patient eligible for recruitment to BSPAR Etanercept Study?

All

8.8.B Has patient been recruited to the BSPAR Etanercept Study?

All

8.9.A Is the patient eligible for recruitment to the BCRD study?

All

8.9.B Has the patient been recruited to the BCRD study?

All