Session Information
Session Type: Abstract Submissions (ACR)
Background/Purpose: Quality indicators (QI) are minimum standards of medical care in support of optimal disease outcomes. In childhood-onset systemic lupus erythematous (cSLE), 26 QI’s, which are categorized into nine domains, have recently been developed based on international consensus and scientific evidence. The current level at which these QI’s 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’s were acquired via chart review and analyzed collectively in 483 cSLE patients followed at seven international tertiary pediatric rheumatology centers – four in the United States, two in Brazil, and one in India. All cSLE patients followed in the participating centers were enrolled. The QI’s were adjudicated to be satisfactorily met if they were performed and documented for ³ 80% cSLE patients they were applicable for.
Results: Adherence to the QI’s varied widely, ranging from 61 to 100%. The QI with the highest adherence (100%) fell under the Pregnancy domain. Most of the QI’s were satisfactorily met while six QI’s were not (Table 1). These six QI’s were classified under the following domains: Medication Management, General Prevention, Lupus Nephritis and Hypertension Management, Bone Health, and Education on Cardiovascular Risk Factors. Adherence to the QI’s was similar across centers, supporting the suitability and appropriateness of the current cSLE QI’s for international use.
Conclusion: Based on this benchmarking effort, the medical care of patients with cSLE at the participating international tertiary pediatric rheumatology centers is very good. Further efforts are warranted to improve the performance of several QI’s especially those pertaining to Education on Cardiovascular Risk Factors.
Table 1: Adherence to the Quality Indicators
|
Quality Indicators by Domain |
Results (%) |
|
Laboratory Testing at Diagnosis and Screening |
|
|
Obtained diagnostic/confirmatory labs within first two visits |
96 |
|
Obtained lab surveillance of complete blood count, renal, liver function test every 12 months |
99 |
|
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) |
82 |
|
Discussed transition plan to appropriate adult healthcare providers with patient age ≥ 14 years |
62 |
|
Lupus Nephritis (LN) and Hypertension Management |
|
|
Kidney biopsy discussed/ordered/performed if developed proteinuria > 500 mg/day, or worsening glomerular filtration rate (GFR), or urinary sediment |
86 |
|
Evaluated by a nephrologist in the last year for LN and of hypertension |
67 |
|
Evaluated by rheumatologist every 3 months in last year if a patient has known LN regardless of disease activity |
97 |
|
Received kidney biopsy when diagnosed with LN |
80 |
|
If LN Class III/IV, treated with immunosuppressive and glucocorticoids within 1 month |
96 |
|
Angiotensin receptor blocker or Angiotensin-converting enzyme inhibitor were prescribed if ongoing proteinuria > 500 mg/day or worsening GFR in last year of care. |
94 |
|
Check assessments (kidney function, urine sediment, and proteinuria) every three months |
89 |
|
Medication Management |
|
|
If started new medications, discussed risk vs. benefit of therapy |
96 |
|
Currently prescribed any antimalarial therapy |
91 |
|
Attempted to taper a dose of steroids not acceptable for chronic use |
90 |
|
Attempted to taper and unable to decrease steroid; added/increased steroid sparing agent |
61 |
|
Surveillance for medication safety done at regular intervals |
99 |
|
Bone Health |
|
|
Received at least one bone mineral density testing DEXA scan |
68 |
|
Repeat bone mineral density testing if baseline testing outside normal limits (Z score ≤ -2) |
80 |
|
Prescribed calcium/vitamin D if a patient is on any steroid therapy |
88 |
|
Ophthalmological Surveillance |
|
|
Receives eye exams annually while on anti-malarial therapy |
81 |
|
Receives eye exams annually while on glucocorticoids |
82 |
|
Education on Cardiovascular Risk Factors |
|
|
Education on cardiovascular risk factors (smoking, hypertension, high body mass index) every 1 year with patient and parent if patient is 13 years or older |
68 |
|
Discussed lifestyle modifications (smoking cessation, weight control, exercise) every 2 years with parent and patient 13 years or older |
70 |
|
Pregnancy |
|
|
Anti-SSA, anti-SSB and anti-phospholipid antibodies have been assessed during pregnancy |
100 |
|
Neuropsychiatric Manifestations |
|
|
Prescribed Immunosuppressive therapy if patient has major neuropsychiatric manifestations in the last year of care (optic neuritis, coma, psychosis, etc.) |
94 |
Disclosure:
A. I. Zaal,
None;
R. Mina,
None;
S. Appenzeller,
None;
J. Harris,
None;
M. F. Silva,
None;
J. Lee,
None;
P. Khandekar,
None;
M. Centeville,
None;
H. Liu,
None;
J. D. Pendl,
None;
A. Johnson,
None;
J. L. Huggins,
None;
R. Khubchandani,
None;
S. P. Ardoin,
None;
M. S. Klein-Gitelman,
None;
C. A. Silva,
Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP 11/12471-2), Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq 302724/2011-7 ), Federico Foundation and by Núcleo de Apoio à Pesquisa “Saúde da Criança e do Adolescente,
2;
H. I. Brunner,
None,
2.
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