Arthritis & Rheumatism, Volume 63,
November 2011 Abstract Supplement

Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Chicago, Illinois November 4-9, 2011.

Achieving Consensus on Quality Indicators for Pediatric Systemic Lupus Erythematosus.

Pendl1,  Joshua D., Hollander2,  Matthew C., Nelson1,  Shannen L., Morgan3,  Xolti, Ruperto4,  Nicolino, Beresford5,  Michael W., Klein-Gitelman6,  Marisa

Cincinnati Children's Hospital Medical Center, Cincinnati, OH
The University of Hong Kong, Hong Kong, Hong Kong
Seattle Children's Hospital, Seattle, WA
University of Cincinnati, Cincinnati, OH
PRINTO-IRCCS, Genova, Italy
Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom
Children's Memorial Hospital, Chicago, IL
Texas Scottish Rite Hospital, Dallas, TX
University Children's Hospital Ljubljana, Ljubljana, Slovenia
Childrens Hosp Ricardo Gutierrez, Buenos Aires, Argentina


Quality Indicators (QI) are retrospectively measurable elements of practice performance for which there is evidence or consensus that can be used to assess the quality of care provided. Consensus-derived QI for pediatric systemic lupus erythematosus (pSLE) could serve as international benchmarks to assess the quality of patient care. By regularly monitoring adherence to QI in a clinical setting, targeted interventions may be implemented to improve the quality of medical care that patients with pSLE receive.


Based on the medical literature, a Delphi survey was created and distributed to the physician membership of PRES, PANLAR, CARRA and the ACR via e-mail. Consensus was considered 80% agreement or higher.


There was consensus (97%) among the 297 respondents that simply applying QI developed by the ACR and EULAR for adults with SLE was insufficient and that distinct QI for pSLE were needed. Respondents concurred that 5 of the 20 ACR and 5 of the 23 EULAR adult QI are also suitable for pSLE in their current form (Table 1). An additional 14 ACR and 17 EULAR adult QI might be useful for pSLE after modifications. Consensus (>80% agreement) or near consensus (>70% agreement) was reached among respondents that all categories of adult QI are still useful for children with the exceptions of "Pregnancy" and "Reproductive Health," which achieved lower levels of agreement (Table 2).

Table 1. Consensus on ACR and EULAR adult SLE Quality Indicators that are useful to pSLE in their current form

Quality IndicatorACR/EULAR
IF a patient has a flare after having achieved remission of kidney disease, THEN diligent follow-up of renal disease is needed.EULAR
IF a patient with pSLE is on immunosuppressive therapy, THEN an inactivated influenza vaccination should be administered annually, unless contraindicated.ACR
IF a patient with pSLE is pregnant, THEN anti-SSA, anti-SSB, and anti-phospholipid antibodies should be documented in the medical record.ACR
IF a patient is prescribed a new medication for pSLE (e.g., NSAIDs, DMARDs, or glucocorticoids), THEN a discussion with the patient about the risks versus benefits of the chosen therapy should be documented.ACR
IF a patient has pSLE, THEN lifestyle modifications (smoking cessation, weight control, exercise) are likely to be beneficial for patient outcomes and should be encouraged.EULAR
IF a patient with pSLE has proliferative lupus nephritis, THEN glucocorticoids in combination with immunosuppressive agents (cyclophosphamide, mycophenolate mofetil) should be used for treatment.EULAR
IF a patient has newly diagnosed lupus nephritis, THEN renal biopsy, urine sediment analysis, proteinuria, and kidney function should all be assessed.EULAR
IF a patient has pSLE, THEN education about sun avoidance should be documented at least once in the medical record (e.g., wearing protective clothing, applying sunscreens whenever outdoors, and avoiding sunbathing).ACR
IF a patient is diagnosed with proliferative pSLE nephritis (WHO or ISN/RPS class III or IV), THEN therapy with corticosteroids combined with another immunosuppressant agent should be provided and documented within 1 month of this diagnosis, unless contraindicated.ACR
IF a patient with pSLE has major neuropsychiatric manifestations (optic neuritis, acute confusional state/coma, cranial or peripheral neuropathy, psychosis, and transverse myelitis/myelopathy), THEN immunosuppressive therapy should be considered.EULAR

Table 2. Percentage of expert respondents (n=297) who agreed that the following categories of QI for adults with SLE were still applicable to children with pSLE

Quality Indicator Domain% Agreement
Renal Disease/Lupus Nephritis88%
Growth and Development88%
Quality of Life Including School Function88%
Drug Monitoring87%
Control of Overall Disease Activity85%
Neuropsychiatric Lupus82%
Anti-Phospholipid Antibodies81%
General Preventative Strategies77%
Avoidance of Overall Disease Damage76%
Contraception/Reproductive Counseling76%
Cardiovascular Disease72%
Reproductive Health65%


There is great demand among pediatric rheumatologists to develop QI for pSLE. Initial agreement has been reached about the types and domains of QI for pSLE, but additional discussion and consensus formation under consideration of the medical evidence is needed to finalize a set of QI for pSLE. This distinct set of QI could be used to define and improve standard of care treatment for children and adolescents with pSLE.

To cite this abstract, please use the following information:
Pendl, Joshua D., Hollander, Matthew C., Nelson, Shannen L., Morgan, Xolti, Ruperto, Nicolino, Beresford, Michael W., et al; Achieving Consensus on Quality Indicators for Pediatric Systemic Lupus Erythematosus. [abstract]. Arthritis Rheum 2011;63 Suppl 10 :612

Abstract Supplement

Meeting Menu