With a focus on children with multiple disabilities (CMD), the purpose of this quality improvement project was to elevate educational measurement and practices involving CMD. Using the goal attainment scaling (GAS) methodology, this project was conducted within a public charter school, Pattison’s Academy for Comprehensive Education (PACE), focusing on 31 CMD and measuring student improvement and program effectiveness. For 2010–2011 and 2011–2012, improvements were demonstrated for the majority of CMD by meeting or exceeding their goals. Goal attainment scaling was able to capture improvement in educational and rehabilitation goals in the majority of CMD. Goal attainment scaling can provide an indication of a program’s effectiveness. The use of GAS in CMD has potential to maximize participation across the school setting where all children in the United States commonly develop and learn skills as well as find meaning.

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Introduction: Optimal management of neonates with tetralogy of Fallot and pulmonary atresia (TOF/PA) with confluent pulmonary arteries is unknown. We sought to compare outcomes for patients who underwent primary complete repair vs. initial surgical palliation followed by delayed repair. Methods: We conducted a retrospective study at 20 centers within CoRe-PCICS (Collaborative Research from the Pediatric Cardiac Intensive Care Society). Data were collected on infants undergoing initial surgical intervention at 0 - 60 days of age with TOF/PA from 2009 to 2018, excluding patients with MAPCAs or those undergoing ductal stenting (n=22). The primary outcome was days alive and out of hospital in first year of life (DAOH). Secondary outcomes were 1 year mortality and a composite major complication outcome (similar to that in prior STS-CHSD studies), defined as occurrence of ≥ 1 of the following: renal failure requiring dialysis, stroke/seizure, permanent pacemaker, ECMO, or diaphragm paralysis during a palliation and/or repair hospitalization, or unplanned reoperation in the first year. Multivariable modeling with generalized estimating equations were utilized to compare outcomes between groups. Results: Of 210 subjects, 79 underwent primary complete repair and 131 underwent surgical palliation. Patients who underwent palliation had greater use of preoperative mechanical ventilation at first procedure (26% vs. 8%, p = 0.002). Other baseline characteristics were similar between groups (p > 0.05 for all). There was no statistically significant difference in DAOH between the palliation and primary repair groups [median (25%,75% IQR): 319 (280,336) vs. 338 (314,348 days), adjusted p = 0.20]. Nine (7%) patients who underwent palliation died in the first year of life vs. 4 (6 %) who underwent primary repair (adjusted OR: 1.1, 95% CI: 0.3-4.5; p = 0.9). At least one major complication occurred in 35% of patients who underwent palliation vs. 18% of patients who underwent primary repair (adjusted OR: 2.5, 95% CI: 1.4-4.4, p = 0.001). Conclusions: For infants with TOF/PA with confluent pulmonary arteries, a strategy of surgical palliation or primary complete repair resulted in similar DAOH and early mortality, whereas the morbidity incidence favored primary repair.

BACKGROUND: Hospitalizations for Black patients with inflammatory bowel disease (IBD) have increased in recent decades though our understanding of disease behavior in Black patients remains limited and concerns related to healthcare equity persist. Existing data are largely drawn from small case series at IBD referral centers or national registries lacking granular longitudinal outpatient data. Our aim was to determine whether there are racial or socioeconomic disparities in acute care utilization as measured by hospitalizations and emergency department (ED) visits within a large national cohort of IBD patients. METHODS: National Veterans Heath Administration (VHA) data were used to examine baseline disease characteristics and two years of utilization following an index outpatient gastroenterology visit for Crohn’s disease (CD) or ulcerative colitis (UC) in 2017. To account for patients more likely to access care outside the VHA, we excluded those with less than four unique VHA encounters per year. We compared differences in comorbidity burden [Charlson comorbidity index, (CCI)], disease duration, surgical history and modifiable IBD severity risk factors (opioid use, tobacco use, biologic agent use, anemia, malnutrition) based on race and area deprivation index (ADI), a multidimensional marker for regional socioeconomic status (SES). Negative binomial regression was used to model demographic and clinical risk factors associated with hospitalization and ED visits. RESULTS: 19,442 patients (47.4% with CD and 52.6% with UC) were included: 14% Black, 5% Hispanic and 76% White. Compared to White patients, Black patients were younger, more likely to have anemia, perianal disease, and be in the bottom quartile of ADI; they were less likely to have a history of intestinal resection. IBD type, disease duration, CCI, and rates of tobacco use, opioid use, and malnutrition were not different between Black and White patients. On bivariate analysis, Black patients had increased mean and median ED visits compared to White patients (mean 4.48 vs 3.32; p < 0.001) though no differences were seen in hospitalizations (mean 0.96 vs 0.92; p=NS). On stepwise multivariable modeling, hospitalization and ED utilization were significantly higher among Black patients when controlling for age, sex, type of IBD, and disease duration [OR for hospitalization: 1.114 (95% CI: 1.046-1.199); OR for ED visit: 1.191 (95% CI: 1.125-1.261)]. After sequential adjustment for CCI and modifiable IBD severity risk factors, no differences in hospitalizations were seen between Black and White patients. In the full model for ED visits including adjustments for modifiable IBD severity risk factors (all significant), Black race was significantly associated with increased frequency of ED access [OR: 1.261 (95% CI: 1.19-1.336)], while ADI was not. CONCLUSION: In this analysis of a large national outpatient cohort of patients with IBD, we identified significant racial differences in IBD disease behavior, anemia and subsequent acute care utilization. Racial differences in hospitalization were not significant after controlling for modifiable IBD risk factors suggesting actionable targets to mitigate the observed disparities. However, Black race was independently associated with ED utilization even in a healthcare system where access to care is theoretically similar. Future studies should investigate factors underlying increased ED utilization among Black IBD patients in further detail.