Initial Benchmarking of the Quality of Medical Care in Childhood‐Onset Systemic Lupus Erythematosus

Abstract

Objective To assess the quality of medical care in childhood-onset systemic lupus erythematosus (cSLE) at tertiary pediatric rheumatology centers as measured by observance cSLE quality indicators (cSLE-QI). Methods International consensus has been achieved for cSLE-QI (Hollander et al. Arthritis Care & Research, 2013) capturing medical care provision in nine domains: diagnostic testing, education of cardiovascular (CV) risk and lifestyles, lupus nephritis (LN), medication management, bone health, ophthalmological surveillance, transition, pregnancy and vaccination. Using medical record information, the level of performance these cSLE-QI was assessed in cSLE populations treated at four tertiary pediatric rheumatology centers in the U.S, two in Brazil, and one center in India. Results A total of 483 cSLE patients were assessed. Care for the 310 U.S. patients differed markedly for cSLE-QI addressing LN, bone health, vaccinations, education on CV risk, and transition planning. Performance of safety blood testing for medications was high at all centers. Despite often similar performance on the cSLE-QI, access to kidney biopsies was lower in Brazil than in the U.S. Irrespective of country of practice, larger centers tended to meet the cSLE-QI more often than smaller centers. Conclusions The cSLE-QI, evidence based minimum standards of medical care, are not consistently met in the U.S. or some other countries outside the U.S. This has the potential to contribute to suboptimal cSLE outcomes.

Variation in Preventive Care in Children Receiving Chronic Glucocorticoid Therapy

“…In children with SLE, a high degree of variation existed in preventive care performance at centers in the United States, Brazil, and India. (17) In general, larger centers more consistently fulfilled the SLE quality indicators. Quality metrics have been scrutinized in ambulatory care delivery.…”

American College of Rheumatology Provisional Criteria for Global Flares in Childhood‐Onset Systemic Lupus Erythematosus

“…The same was true for the CART-BILAG criteria (AUC 0.84, sensitivity 93.9%, and specificity 72.9%). Comparisons of accuracies in the development data set in 2010 (18) and this validation data set are summarized in Table 3. Figure 2A and B depict potential thresholds for defining minor, moderate, and major flares.…”

“…A priori , the consensus level at the consensus conference was set at 75%, i.e. comparable or even somewhat higher than that chosen for similar studies in the past (15–19). Using nominal group technique guided by an experienced moderator (BMF), the expert panel assessed each of the four top candidate flare algorithms (14) and potential flare score thresholds according to [1] feasibility, i.e.…”

“…Two of the authors (HIB and MH) conducted a pilot study to test the format of the PP. Built on this pilot study, we generated over 2,996 unique PPs, using prospectively collected data of cSLE patients from the Cincinnati Children's Hospital Medical Center Lupus Registry (18), the Paediatric Rheumatology International Trials Organisation Lupus Cohort (19), the UK Juvenile-Onset SLE Cohort Study (20), and the Atherosclerosis Prevention in Pediatric Lupus Erythematosus (APPLE) trial (21). Missing observations in the data sets were imputed using multiple imputation methods and expectationmaximization algorithms in computation (22)(23)(24).…”

“…A priori, the consensus level at the consensus conference was set at 75%, i.e., comparable or even somewhat higher than that chosen for similar studies in the past (15)(16)(17)(18). 816 Brunner et al…”