Publications

OBJECTIVES

Although process measures to assess quality of care in systemic lupus erythematosus (SLE) are available, their relationship to long-term outcomes has not been studied. Using a prospective, longitudinal cohort study, we examined the associations between high-quality care and two important SLE outcomes, disease activity and damage.

METHODS

Data were derived from the University of California, San Francisco Lupus Outcomes Study. Participants were followed from 2009 through 2013, responding to yearly surveys. Primary outcomes in this study were clinically meaningful increases in disease activity and damage, assessed by the Systemic Lupus Activity Questionnaire (SLAQ) and the Brief Index of Lupus Damage (BILD), respectively. Using multivariable regression, we examined the relationship between high performance on 13 validated quality measures (receipt of ≥85% of quality measures), and disease outcomes, adjusting for disease status, sociodemographic characteristics, healthcare services and follow-up time.

RESULTS

The 737 participants were eligible for a mean of five quality measures (SD 2, range 2-12). There were 155 and 162 participants who had clinically meaningful increases in SLAQ and BILD, respectively. In our models, we found no statistically significant relationship between performance on quality measures and changes in SLAQ. However, receiving higher-quality SLE care was significantly protective against increased disease damage (adjusted OR 0.4, 95% CI 0.4 to 0.7), even after adjusting for covariates.

DISCUSSION

In this community-based cohort, we illustrate for the first time a strong link between processes of care, defined by SLE quality measures, and the subsequent accumulation of disease damage, an important outcome.

We recommend that endoscopy in children be performed by pediatric-trained endoscopists whenever possible. We recommend that adult-trained endoscopists coordinate their services with pediatricians and pediatric specialists when they are needed to perform endoscopic procedures in children. We recommend that endoscopy be performed within 24 hours in symptomatic pediatric patients with known or suspected ingestion of caustic substances. We recommend emergent foreign-body removal of esophageal button batteries, as well as 2 or more rare-earth neodymium magnets. We recommend that procedural and resuscitative equipment appropriate for pediatric use should be readily available during endoscopic procedures. We recommend that personnel trained specifically in pediatric life support and airway management be readily available during sedated procedures in children. We recommend the use of endoscopes smaller than 6 mm in diameter in infants and children weighing less than 10 kg. We recommend the use of standard adult duodenoscopes for performing ERCP in children who weigh at least 10 kg. We recommend the placement of 12F or 16F percutaneous endoscopic gastrostomy tubes in children who weigh less than 50 kg.