Emily Herreshoff

Inpatient Health Care Utilization by Children and Adolescents With Systemic Lupus Erythematosus and Kidney Involvement

To evaluate inpatient health care utilization for children with systemic lupus erythematosus (SLE) with and without kidney disease.

Optimizing Enrollment of Patients into Nephrology Research Studies

Advances in medical care and biomedical research depend on the participation of human subjects. Poor patient enrollment in research has limited past clinical and translational research endeavors in nephrology. Simultaneously, patients and their caregivers are seeking better diagnostic, monitoring, and therapeutic approaches to improve or restore kidney and overall health. This manuscript will discuss a framework and strategies to optimize patient enrollment within nephrology research and provide examples of success from existing nephrology research programs.

Development of a Pediatric Adverse Events Terminology

In 2009, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) established the Pediatric Terminology Harmonization Initiative to establish a core library of terms to facilitate the acquisition and sharing of knowledge between pediatric clinical research, practice, and safety reporting. A coalition of partners established a Pediatric Terminology Adverse Event Working Group in 2013 to develop a specific terminology relevant to international pediatric adverse event (AE) reporting. Pediatric specialists with backgrounds in clinical care, research, safety reporting, or informatics, supported by biomedical terminology experts from the National Cancer Institute’s Enterprise Vocabulary Services participated. The multinational group developed a working definition of AEs and reviewed concepts (terms, synonyms, and definitions) from 16 pediatric clinical domains. The resulting AE terminology contains >1000 pediatric diseases, disorders, or clinical findings. The terms were tested for proof of concept use in 2 different settings: hospital readmissions and the NICU. The advantages of the AE terminology include ease of adoption due to integration with well-established and internationally accepted biomedical terminologies, a uniquely temporal focus on pediatric health and disease from conception through adolescence, and terms that could be used in both well- and underresourced environments. The AE terminology is available for use without restriction through the National Cancer Institute’s Enterprise Vocabulary Services and is fully compatible with, and represented in, the Medical Dictionary for Regulatory Activities. The terminology is intended to mature with use, user feedback, and optimization.

Renal Complications in Pregnancy Preceding Glomerulonephropathy Diagnosis

C1Q, C1Q nephropathy; eGFR, estimated glomerular filtration rate; FSGS, focal segmental glomerulosclerosis; HSP, Henoch-Schonlein purpura; IgAN, IgA nephropathy; IgAV, IgA vasculitis; inc., including; IQR, interquartile range; MCD, minimal change disease; MN, membranous nephropathy; UPCR, urine protein-to-creatinine ratio. P values from c test for categorical variables and t tests for continuous variables. UPCR was log transformed before testing. To the Editor: Primary glomerulonephropathies (GNs) and preeclampsia share a common phenotype of proteinuria, hypertension, and renal dysfunction. Precise mechanisms for these disease manifestations in each setting are not fully elucidated; however, both preeclampsia and active glomerular disease are associated with podocyturia and altered expression of podocyte-specific proteins. Preeclampsia may lead to immediate adverse pregnancy outcomes and also increases the odds of developing cardiovascular disease and end-stage renal disease. Given the epidemiologic and hypothesized pathophysiologic parallels between glomerular disease and hypertensive disorders of pregnancy, we studied a cohort of patients with biopsy-proven GN (Cure Glomerulonephropathy) to assess whether preeclampsia, proteinuria, worsening hypertension, or decreased kidney function (“renalrelevant complications”) during a first pregnancy altered the timing and nature of the subsequent GN presentation. Missingness (no complications n, any complications n): eGFR (51,8); UPCR (78,16).

Provider perspectives on treatment decision-making in nephrotic syndrome

Background Managing patients with nephrotic syndrome (NS) remains difficult for the practicing nephrologist. This often young patient population is faced with a debilitating, relapsing and remitting disease with non-specific treatment options that are often poorly tolerated. Clinicians managing these complex patients must attempt to apply disease-specific evidence while considering the individual patients clinical and personal situation. Methods We conducted qualitative interviews to ascertain the provider perspectives of NS, treatment options and factors that influence recommendations for disease management, and administered a survey to assess both facilitators and barriers to the implementation of the Kidney Disease: Improving Global Outcomes (KDIGO) guidelines. Results When making treatment recommendations, providers considered characteristics of various treatments such as efficacy, side effects and evaluation of risk versus benefit, taking into account how the specific treatment fit with the individual patient. Time constraints and the complexity of explaining the intricacies of NS were noted as significant barriers to care. Although the availability of guidelines was deemed a facilitator to care, the value of the KDIGO guidelines was limited by the perception of poor quality of evidence. Conclusions The complexity of NS and the scarcity of robust evidence to support treatment recommendations are common challenges reported by nephrologists. Future development and use of shared learning platforms may support the integration of best available evidence, patient/family preferences and exchange of information at a pace that is unconstrained by the outpatient clinic schedule.