A133: Initial Benchmarking of the Quality of Medical Care of Children and Adolescents with Lupus
Authors: Zaal Ahmad I. , Appenzeller Simone , Harris Julia G. , Silva Marco F. , Lee Jiha , Centeville Maraisa , Liu HaiMei , Pendl Joshua D. , Huggins Jennifer L. , Johnson Anne , Silva Clovis A. , Hermine Brunner 
Published: March 2014

Background/Purpose:

Recently, 26 quality indicators (QI) categorized into 9 domains for childhood‐onset systemic lupus erythematous (cSLE) have been developed based on international consensus and scientific evidence. QI are defined as minimum standards of medical care in support of optimal disease outcomes. The current level at which these QI are followed has not been well documented. Hence, the objective of this study is to assess the current quality of medical care received by patients with cSLE at tertiary pediatric rheumatology centers.

Methods:

Cross‐sectional data pertaining to the QI were acquired via chart review and analyzed collectively in 290 cSLE patients followed at four tertiary pediatric rheumatology centers—two in the United States and two in Brazil.

Results:

Adherence to the QI differed by QI domain, ranging from 41 to 100%. The QI domain with the highest adherence 100% was Laboratory Testing at the time of diagnosis, and the lowest domain 41% was Medication Management. The recommended kidney biopsies for newly diagnosed lupus nephritis were done in only 67% of the patients and 85% of the patients received at least one of the recommended vaccinations (Table ). Cardiovascular risks factors were discussed in 86% of cases when patient was 13 years or older. Adherence to the QI differences between countries and insurance status will be presented, supporting that the set of current QI are suitable for international use.

Adherence to QI by Domain

Quality Indicators by Domain
Results

Lab testing at diagnosis & screening

Obtained diagnostic/confirmatory labs within first two visits
100%

Obtained lab surveillance of CBC, renal, LFT every 12 months
85%

General prevention

Prescribed influenza and/or encapsulated organisms vaccination, unless contraindicated
85%

Discussed and documented education on sun avoidance at least once in the medical record (e.g., wearing protective clothing, applying sunscreens whenever outdoors, and avoiding sunbathing)
89%

Discussed transition plan to appropriate adult healthcare providers with patient age ≥14 years.
78%

Lupus nephritis (LN) and hypertension management

Kidney biopsy discussed/ordered/performed if developed proteinuria >500 mg/day, or worsening GFR, or urinary sediment
60%

Evaluated by a nephrologist in the last year of care for lupus nephritis (LN) and of hypertension
65%

Evaluated by rheumatologist every 3 months in last year if a patient has known LN regardless of disease activity.
96%

Received kidney biopsy when diagnosed with LN
67%

Class III/IV, treated with immunosuppressive + glucocorticoids within 1 month
92%

Angiotensin receptor blocker (ARB) or, Angiotensin–converting enzyme (ACE) inhibitor were prescribed if ongoing proteinuria >500 mg/day or worsening GFR in last year of care.
96%

Check assessments (Kidney function, urine sediment, and proteinuria) every three months.
99%

Medication Management

If started new meds, discussed risk vs. benefit of therapy
97%

Currently prescribed any antimalarial therapy
92%

Attempted to taper a dose of steroids not acceptable for chronic use.
89%

Attempted to taper and unable to decrease steroid; added/increased steroid sparing agent.
41%

Surveillance for medication safety done at regular intervals.
99%

Bone Health

Received at least one bone mineral density testing DEXA scan
72%

Repeat bone mineral density testing if baseline testing outside normal limits (Z score ≤2)
62%

Prescribed calcium/vitamin D if a patient is on any steroid therapy.
78%

Ophthalmological surveillance

Receives eye exams annually while on anti‐malarial therapy
82%

Receives eye exams annually while on glucocorticoids
85%

Education on cardiovascular risk factors

Education on cardiovascular risk factors (smoking, hypertension, high BMI) every 1 year with patient and parent if patient is 13 years or older.
86%

Discussed lifestyle modifications (smoking cessation, weight control, exercise) every 2 years with parent and patient 13 years or older.
87%

Pregnancy

Anti‐SSA, anti‐SB and anti‐phospholipid antibodies have been assessed during pregnancy
100%

CNS health

Prescribed Immunosuppressive therapy if patient has major neuropsychiatric manifestations in last year of care (Optic neuritis, coma, psychosis … etc.)
94%

Conclusion:

Based on this initial benchmarking effort, the medical care of patients with cSLE at tertiary pediatric rheumatology centers is very good. Systematic planning and documentation of patient education on lifestyle modifications seems warranted and is expected to improve the self‐management skills of cSLE patients. Furthermore, increased focus on bone health, eye exams annually, and adequate vaccination of cSLE patients are areas to continue to monitor.