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Browsing by Author "Smoyer, William E."
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Item Clinical Characteristics and Treatment Patterns of Children and Adults With IgA Nephropathy or IgA Vasculitis: Findings From the CureGN Study(Elsevier, 2018-08-03) Selewski, David T.; Ambruzs, Josephine M.; Appel, Gerald B.; Bomback, Andrew S.; Matar, Raed Bou; Cai, Yi; Cattran, Daniel C.; Chishti, Aftab S.; D’Agati, Vivette D.; D’Alessandri-Silva, Cynthia J.; Gbadegesin, Rasheed A.; Hogan, Jonathan J.; Iragorri, Sandra; Jennette, J. Charles; Julian, Bruce A.; Khalid, Myda; Lafayette, Richard A.; Liapis, Helen; Lugani, Francesca; Mansfield, Sarah A.; Mason, Sherene; Nachman, Patrick H.; Nast, Cynthia C.; Nester, Carla M.; Noone, Damien G.; Novak, Jan; O’Shaughnessy, Michelle M.; Reich, Heather N.; Rheault, Michelle N.; Rizk, Dana V.; Saha, Manish K.; Sanghani, Neil S.; Sperati, C. John; Sreedharan, Rajasree; Srivastava, Tarak; Swiatecka-Urban, Agnieszka; Twombley, Katherine; Vasylyeva, Tetyana L.; Weaver, Donald J.; Yin, Hong; Zee, Jarcy; Falk, Ronald J.; Gharavi, Ali G.; Gillespie, Brenda W.; Gipson, Debbie S.; Greenbaum, Larry A.; Holzman, Lawrence B.; Kretzler, Matthias; Robinson, Bruce M.; Smoyer, William E.; Flessner, Michael; Guay-Woodford, Lisa M.; Kiryluk, Krzysztof; CureGN Consortium; Pediatrics, School of MedicineIntroduction: The Cure Glomerulonephropathy Network (CureGN) is a 66-center longitudinal observational study of patients with biopsy-confirmed minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, or IgA nephropathy (IgAN), including IgA vasculitis (IgAV). This study describes the clinical characteristics and treatment patterns in the IgA cohort, including comparisons between IgAN versus IgAV and adult versus pediatric patients. Methods: Patients with a diagnostic kidney biopsy within 5 years of screening were eligible to join CureGN. This is a descriptive analysis of clinical and treatment data collected at the time of enrollment. Results: A total of 667 patients (506 IgAN, 161 IgAV) constitute the IgAN/IgAV cohort (382 adults, 285 children). At biopsy, those with IgAV were younger (13.0 years vs. 29.6 years, P < 0.001), more frequently white (89.7% vs. 78.9%, P = 0.003), had a higher estimated glomerular filtration rate (103.5 vs. 70.6 ml/min per 1.73 m2, P < 0.001), and lower serum albumin (3.4 vs. 3.8 g/dl, P < 0.001) than those with IgAN. Adult and pediatric individuals with IgAV were more likely than those with IgAN to have been treated with immunosuppressive therapy at or prior to enrollment (79.5% vs. 54.0%, P < 0.001). Conclusion: This report highlights clinical differences between IgAV and IgAN and between children and adults with these diagnoses. We identified differences in treatment with immunosuppressive therapies by disease type. This description of baseline characteristics will serve as a foundation for future CureGN studies.Item Creating Local Learning Health Systems: Think Globally, Act Locally(AMA, 2016-12-20) Smoyer, William E.; Embi, Peter J.; Moffatt-Bruce, Susan; Medicine, School of MedicineTransforming the delivery of health care to maximize value, by measurably improving clinical outcomes while simultaneously reducing costs, is fundamental to reforming health care. Achieving such a goal requires fundamental changes to health care delivery, through so-called clinical transformation efforts that better align people, processes, and technology. As such efforts continue to gain momentum, they increasingly demonstrate the importance of weaving continuous and systematic evidence-generating medicine activities into routine practice. This model creates a continuous cycle of systematic care improvement by coupling evidence generation with evidence application to health care that embodies and enables the goals of the learning health system (LHS).Item Psychosocial supports within pediatric nephrology practices: A pediatric nephrology research consortium survey(Public Library of Science, 2023-05-09) Dawson, Anne E.; Wilson, Camille S.; Smoyer, William E.; Pottanat, Neha; Wilson, Amy C.; Mahan, John D.; LaMotte, Julia E.; Pediatrics, School of MedicineBackground: The landscape of available psychosocial services within pediatric nephrology care is poorly characterized. However, the effects of kidney disease on emotional health and health-related quality of life are well documented, as is the impact of social determinants of health on kidney disease outcomes. The objectives of this study were to assess pediatric nephrologists' perceptions of available psychosocial services and to elucidate inequities in access to psychosocial care. Methods: A web-based survey was distributed to members of the Pediatric Nephrology Research Consortium (PNRC). Quantitative analyses were performed. Results: We received responses from 49 of the 90 PNRC centers. With regards to dedicated services, social work was most commonly available (45.5-100%), followed by pediatric psychology (0-57.1%) and neuropsychology (0-14.3%), with no centers having embedded psychiatry. Availability of psychosocial providers was positively associated with nephrology division size, such that as center size increased, access to various psychosocial providers increased. Notably, the majority of respondents indicated that perceived need for psychosocial support exceeds that which is currently available, even at centers with higher levels of current support. Conclusions: Within the US, there is wide variability in the availability of psychosocial services within pediatric nephrology centers despite a well-documented necessity for the provision of holistic care. Much work remains to better understand the variation in funding for psychosocial services and in utilization of psychosocial professionals in the pediatric nephrology clinic, and to inform key best practices for addressing the psychosocial needs of patients with kidney disease.Item Using Electronic Health Record Data to Rapidly Identify Children with Glomerular Disease for Clinical Research(American Society of Nephrology, 2019-12) Denburg, Michelle R.; Razzaghi, Hanieh; Bailey, L. Charles; Soranno, Danielle E.; Pollack, Ari H.; Dharnidharka, Vikas R.; Mitsnefes, Mark M.; Smoyer, William E.; Somers, Michael J. G.; Zaritsky, Joshua J.; Flynn, Joseph T.; Claes, Donna J.; Dixon, Bradley P.; Benton, Maryjane; Mariani, Laura H.; Forrest, Christopher B.; Furth, Susan L.; Pediatrics, School of MedicineBackground: The rarity of pediatric glomerular disease makes it difficult to identify sufficient numbers of participants for clinical trials. This leaves limited data to guide improvements in care for these patients. Methods: The authors developed and tested an electronic health record (EHR) algorithm to identify children with glomerular disease. We used EHR data from 231 patients with glomerular disorders at a single center to develop a computerized algorithm comprising diagnosis, kidney biopsy, and transplant procedure codes. The algorithm was tested using PEDSnet, a national network of eight children's hospitals with data on >6.5 million children. Patients with three or more nephrologist encounters (n=55,560) not meeting the computable phenotype definition of glomerular disease were defined as nonglomerular cases. A reviewer blinded to case status used a standardized form to review random samples of cases (n=800) and nonglomerular cases (n=798). Results: The final algorithm consisted of two or more diagnosis codes from a qualifying list or one diagnosis code and a pretransplant biopsy. Performance characteristics among the population with three or more nephrology encounters were sensitivity, 96% (95% CI, 94% to 97%); specificity, 93% (95% CI, 91% to 94%); positive predictive value (PPV), 89% (95% CI, 86% to 91%); negative predictive value, 97% (95% CI, 96% to 98%); and area under the receiver operating characteristics curve, 94% (95% CI, 93% to 95%). Requiring that the sum of nephrotic syndrome diagnosis codes exceed that of glomerulonephritis codes identified children with nephrotic syndrome or biopsy-based minimal change nephropathy, FSGS, or membranous nephropathy, with 94% sensitivity and 92% PPV. The algorithm identified 6657 children with glomerular disease across PEDSnet, ≥50% of whom were seen within 18 months. Conclusions: The authors developed an EHR-based algorithm and demonstrated that it had excellent classification accuracy across PEDSnet. This tool may enable faster identification of cohorts of pediatric patients with glomerular disease for observational or prospective studies.