Background/Purpose: Recently, 26 quality indicators (QI) 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 well documented. Hence, the objective of this study was 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 229 cSLE patients followed at four tertiary pediatric rheumatology centers – two in United States and two in Brazil.

Results: Adherence to the QI differed by QI domain, ranging from 62 to 100%. The QI domain with the highest adherence was appropriate ‘Laboratory testing at the time of diagnosis and with cSLE screening’, while the recommended kidney biopsies for newly diagnosed  lupus nephritis were not regularly done (Table 1). Education on medication safety and treatment with antimalarials was generally performed. Conversely, educational efforts on cardiovascular risk factors were not consistently recorded in the medical record, despite the perception of the providers that education had occurred. Likewise, transition planning was not systematically done in over 1/3 of the cSLE patients, and 18% of the patients did not have all of the recommended vaccinations. Adherence to the QI was similar across centers, supporting that the set of current QI are suitable for international use.

Conclusion: Based on this initial benchmarking effort, the medical care of patient with cSLE at tertiary pediatric rheumatology centers is very good, although there is room for improvement. 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 adequate vaccination of cSLE patients appears to be needed.

Table1:  Adherence to QI by Domain                                                                                                                                                                                                                                                                        

Quality Indicators by Domain	Results
Lab testing at diagnosis & screening	99%
General prevention
Vaccination against influenza & encapsulated organisms	82%
Education about sun avoidance	76%
Transition plan for adolescents	67%
Lupus nephritis (LN) and hypertension management
Renal biopsy for newly diagnosed LN	63%
Treat proliferative nephritis with corticosteroids and immunosuppressive agent        within 1 month of diagnosis	73%
Obtain kidney biopsy if patient without LN and develops proteinuria (>500 mg/day) or worsening GFR/urinary sediment	95%
Clinical assessment every 3 months if known LN	94%
Prescribe angiotensin-converting enzyme inhibitor or angiotensin receptor blockers if LN and ongoing proteinuria	90%
Consider co-management with nephrologist	63%
Medication management
Discuss risks versus benefits of new medications	95%
Prescribe antimalarial therapy	93%
Attempt to taper unacceptably high dose of chronic steroids	71%
Laboratory surveillance for medication safety	94%
Bone Health
Bone mineral density testing if received chronic steroids	71%
Repeat bone mineral density testing if baseline testing outside normal limits (Z score ≤ -2)	80%
Recommend calcium and vitamin D after 3 months of steroid therapy	81%
Ophthalmological surveillance
Annual eye screening if treated with corticosteroids	74%
Annual eye screening if treated with antimalarial therapy	71%
Education on cardiovascular risk factors
Education regarding cardiovascular risk factors with parent and patient age 13 years and older	69%
Education on lifestyle modifications	72%

---

« Back to 2013 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/initial-benchmarking-of-the-quality-of-medical-care-of-children-and-adolescents-with-lupus/