Table 1 UCAN CURE JIA KPI Definitions and Operational Definitions [3]
From: Evaluating key performance indicators of the process of care in juvenile idiopathic arthritis
KPI | Definition | Operational Definition |
|---|---|---|
Measurement of Patient Outcomes KPIs | ||
1. Rheumatological joint count | Percentage of patients where a joint count was conducted on the first visit and each subsequent visit using a validated tool | Numerator: the number of patients where a joint count was conducted on the first visit and each subsequent visit using any reliable tool in the measurement period Denominator: the total number of patients seen in the measurement period |
2. Physician’s Global Assessment (PGA) of disease activity | Percentage of patients assessed for a PGA using any validated tool at the first visit and at each subsequent visit | Numerator: the number of patients assessed for a PGA at the first visit and at each subsequent visit in the measurement period Denominator: the total number of patients seen in the measurement period |
3. Assessment of functional ability | Percentage of patients assessed for functional ability using any validated tool at the first visit and at every routine clinic visit | Numerator: the number of patients assessed for functional ability at the first visit and at each subsequent visit in the measurement period Denominator: the total number of patients seen in the measurement period |
4. Composite disease activity measurement | Percentage of patients with an assessment of disease activity using the cJADASa at the first visit and at every routine clinic visit | Numerator: the number of patients with an assessment of disease activity using the cJADASa in the measurement period Denominator: the total number of patients seen in the measurement period |
5. Assessment of arthritis-related pain | Percentage of patients assessed for pain at the first visit and each subsequent visit that occur at least 7-days apart using any validated age-appropriate tool to measure average pain | Numerator: the number of patients assessed for pain at the first visit and each subsequent visit using any validated, reliable, age-appropriate tool to measure average pain in the measurement period Denominator: the total number of patients seen in the measurement period |
Access to Care KPIs | ||
6. Waiting times for rheumatologist consultation for patients with new onset JIA | The 50th and 90th percentile waiting time for rheumatologic consultation | 50th percentile: the number of days that half the patients in the sample with new onset JIA saw a pediatric rheumatologist and half are still waiting 90th percentile: the number of days that 90% of the patients in the sample with new onset JIA saw a pediatric rheumatologist and 10% are still waiting |
7. Patients newly diagnosed with JIA with at least 1 visit to a pediatric rheumatologist in the first year of diagnosis | Percentage of patients with new onset JIA (incident JIA) with at least 1 visit to a pediatric rheumatologist in the first year of diagnosis | Numerator: the number of patients with new onset JIA with at least one visit to a pediatric rheumatologist in the first year of diagnosis during the measurement period Denominator: the total number of patients with new onset JIA seen during the measurement period |
8. Patients seen in yearly follow-up by a pediatric rheumatologist | Percentage of patients with JIA seen by their pediatric rheumatologist at least once every year over | Numerator: the number of patients with a diagnosis of JIA under the case of a pediatric rheumatologist seen in follow up by a pediatric rheumatologist at least once every year during the measurement period Denominator: the total number patients with a diagnosis of JIA patients under the care of a pediatric rheumatologist in the measurement period excluding patients who meet exclusions |
Safety KPIs | ||
9. Tuberculosis (TB) screening | Percentage of patients screened for TB within 12 months prior to receiving a first course of therapy using a biologic DMARDb | Numerator: the number of patients screened for TB within 12 months prior to start of any biologic therapy using a standard TB skin test/ blood test in the measurement period Denominator: the total number of patients on a biologic therapy in the measurement period |
10. Laboratory monitoring for disease-modifying anti-rheumatic drugs (DMARDs) | Percentage of patients who received methotrexate and leflunomide and monitored for toxicity by clinical laboratory methods | Numerator: the number of patients who received methotrexate and leflunomide and monitored for toxicity 1 month after the start of therapy, and every 3–4 months after by clinical laboratory methods in the measurement period Denominator: the total number of patients who received methotrexate and leflunomide in the measurement period |