IU Indianapolis ScholarWorks :: Browsing by Subject "Developmental Disabilities"

Browsing by Subject "Developmental Disabilities"

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Analyzing client denial trends in the NDI dataset: Patterns and predictive insights
(2024-05) Samala, Vishwasree; Neal, Tiffany; Deodhar, A; Devarapalli, Baby Amulya; Swiezy, Naomi
This project analyzed denial patterns among clients in the HANDS in Autism® NDI Exploratory dataset. Using REDCap and Cerner data, a structured coding scheme was implemented for consistent data entry and scoring. Python was used to quantitatively analyze denial reasons across 2021–2023. The most frequent denial factors included unmet family/parent criteria and issues unrelated to autism. Statistical testing, including Chi-Square and Fisher’s exact tests, revealed no significant relationship between gender and denial reasons. The project also produced a user guide for REDCap data entry and proposed future directions, including expanding the dataset and improving data completeness through enhanced data collection practices.
Analyzing participants demographics, distribution and engagement for the HANDS Developmental Disabilities and/or Autism ECHO tele-mentoring program
(2024-08) Alluri, Dimple Sushma; Neal, Tiffany; Gottipati, Mounika; Swiezy, Naomi
This research aimed to analyze participants' demographics, distribution, and engagement for the HANDS Developmental Disabilities and/or Autism ECHO tele-mentoring program. Data was collected through surveys to understand the representation of different participant types, race composition, gender distribution, and geographic distribution. The study also examined the preferred modes of consultation and professional involvement in diagnosing and supporting individuals with developmental disabilities and autism. Key findings indicated that family/caregivers were the most represented participant type, with a predominant race of White or Caucasians and a higher female participation rate. Indiana showed the highest geographic interest. Preferred consultation methods included phone and online consultations, with email consultations being favored by the majority. Professional involvement highlighted the need for increased engagement in early diagnosis and intervention. Workshop preferences leaned towards webinars, with less interest in all-day conferences. Recommendations were made to increase outreach to community providers, expand email consultation topics, diversify workshop offerings, strengthen professional awareness, and leverage geographic interest to develop localized programs.
Child exposure to parental violence and psychological distress associated with delayed milestones
(American Academy of Pediatrics (AAP), 2013-12) Gilbert, Amy Lewis; Bauer, Nerissa S.; Carroll, Aaron E.; Downs, Stephen M.; Department of Pediatrics, IU School of Medicine
OBJECTIVE: To examine the association between parental report of intimate partner violence (IPV) and parental psychological distress (PPD) with child attainment of developmental milestones. METHODS: By using data collected from a large cohort of primary care patients, this cross-sectional study examined the relationship between parental report of IPV and/or PPD and the attainment of developmental milestones within the first 72 months of a child's life. Multivariate logistic regression analyses were used to adjust for parental report of child abuse concern and sociodemographic characteristics. RESULTS: Our study population included 16 595 subjects. Children of parents reporting both IPV and PPD (n = 88; 0.5%) were more likely to fail at least 1 milestone across the following developmental domains: language (adjusted odds ratio [aOR] 2.1; 95% confidence interval [CI] 1.3-3.3), personal-social (aOR 1.9; 95% CI 1.2-2.9), and gross motor (aOR 3.0; 95% CI 1.8-5.0). Significant associations for those reporting IPV-only (n = 331; 2.0%) were found for language (aOR 1.4; 95% CI 1.1-1.9), personal-social (aOR 1.7; 95% CI 1.4-2.2), and fine motor-adaptive (aOR 1.7; 95% CI 1.0-2.7). Significant associations for those reporting PPD-only (n = 1920; 11.6%) were found for: language (aOR 1.5; 95% CI 1.3-1.7), personal-social (aOR 1.6; 95% CI 1.5-1.8), gross motor (aOR 1.6; 95% CI 1.4-1.8), and fine-motor adaptive (aOR 1.6; 95% CI 1.3-2.0). CONCLUSIONS: Screening children for IPV and PPD helps identify those at risk for poor developmental outcomes who may benefit from early intervention.
Developmental Outcomes of Very Preterm Infants with Tracheostomies
(Elsevier, 2014-06) DeMauro, Sara B.; D'Agostino, Jo Ann; Bann, Carla; Bernbaum, Judy; Gerdes, Marsha; Bell, Edward F.; Carlo, Waldemar A.; D'Angio, Carl; Das, Abhik; Higgins, Rosemary; Hintz, Susan R.; Laptook, Abbot R.; Natarajan, Girija; Nelin, Leif; Poindexter, Brenda B.; Sanchez, Pablo J.; Shankaran, Seetha; Stoll, Barbara J.; Truog, William; Van Meurs, Krisa P.; Vohr, Betty; Walsh, Michele C.; Kirpalani, Haresh; Department of Pediatrics, IU School of Medicine
Objectives To evaluate the neurodevelopmental outcomes of very preterm (<30 weeks) infants who underwent tracheostomy. Study design Retrospective cohort study from 16 centers of the NICHD Neonatal Research Network over 10 years (2001-2011). Infants who survived to at least 36 weeks (N=8,683), including 304 infants with tracheostomies, were studied. Primary outcome was death or neurodevelopmental impairment (NDI, a composite of one or more of: developmental delay, neurologic impairment, profound hearing loss, severe visual impairment) at a corrected age of 18-22 months. Outcomes were compared using multiple logistic regression. We assessed impact of timing, by comparing outcomes of infants who underwent tracheostomy before and after 120 days of life. Results Tracheostomies were associated with all neonatal morbidities examined, and with most adverse neurodevelopmental outcomes. Death or NDI occurred in 83% of infants with tracheostomies and 40% of those without [odds ratio (OR) adjusted for center 7.0 (95%CI, 5.2-9.5)]. After adjustment for potential confounders, odds of death or NDI remained higher [OR 3.3 (95%CI, 2.4-4.6)], but odds of death alone were lower [OR 0.4 (95%CI, 0.3-0.7)], among infants with tracheostomies. Death or NDI was lower in infants who received their tracheostomies before, rather than after, 120 days of life [adjusted OR 0.5 (95%CI, 0.3-0.9)]. Conclusions Tracheostomy in preterm infants is associated with adverse developmental outcomes, and cannot mitigate the significant risk associated with many complications of prematurity. These data may inform counseling about tracheostomy in this vulnerable population.
Driving Systemic Change in Autism Spectrum Disorder Services Through Statewide Planning, Gap Analysis, and Stakeholder Collaboration
(2018) Swiezy, Naomi; Neal, Tiffany; Garman-McClaine, Blaine; Ashby, Iryna
Autism Spectrum Disorder (ASD) continues to grow in prevalence, creating an urgent need for coordinated, high-quality, and culturally responsive services across systems. In Indiana, the HANDS in Autism® Interdisciplinary Training and Resource Center was selected to lead facilitation of the Indiana Interagency Autism Coordinating Council (IIACC) and implementation of the Indiana Comprehensive State Plan for Autism Services. Using evidence-based models such as the Collective Impact Model and implementation science frameworks (e.g., NIRN, START), HANDS conducted statewide gap analyses and built regional implementation teams to assess service needs, guide stakeholder collaboration, and develop strategic goals. Findings emphasized disparities in service access across urban, rural, and mixed regions, limited cultural representation, and a need for shared resource navigation. Progress to date includes increased stakeholder engagement, actionable state-level recommendations, and cross-system alignment focused on improving outcomes and quality of life for individuals with ASD and their families. The framework highlights an iterative, data-driven process for systemic change, applicable across broader ID/DD services.
Early cow's milk introduction is associated with failed personal-social milestones after 1 year of age
(Springer-Verlag, 2014-07) Bennett, William E.; Hendrix, Kristin S.; Thompson-Fleming, Rachel T.; Downs, Stephen M.; Carroll, Aaron E.; Department of Pediatrics, IU School of Medicine
Both the American Academy of Pediatrics (AAP) and the Institute of Medicine (IOM) recommend delaying the introduction of cow's milk until after 1 year of age due to its low absorbable iron content. We used a novel computerized decision support system to gather data from multiple general pediatrics offices. We asked families whether their child received cow's milk before 1 year of age, had a low-iron diet, or used low-iron formula. Then, at subsequent visits, we performed a modified developmental assessment using the Denver II. We assessed the effect of early cow's milk or a low-iron diet on the later failure of achieving developmental milestones. We controlled for covariates using logistic regression. Early cow's milk introduction (odds ratio (OR) 1.30, p = 0.012), as well as a low-iron diet or low-iron formula (OR 1.42, p < 0.001), was associated with increased rates of milestone failure. Only personal-social milestones (OR 1.44, p = 0.002) showed a significantly higher rate of milestone failure. Both personal-social (OR 1.42, p < 0.001) and language (OR 1.22, p = 0.009) showed higher rates of failure in children with a low-iron diet. CONCLUSIONS: There is an association between the introduction of cow's milk before 1 year of age and the rate of delayed developmental milestones after 1 year of age. This adds strength to the recommendations from the AAP and IOM to delay cow's milk introduction until after 1 year of age.
Effect of depth and duration of cooling on deaths in the NICU among neonates with hypoxic ischemic encephalopathy: a randomized clinical trial
(AMA, 2014-12) Shankaran, Seetha; Laptook, Abbot R.; Pappas, Athina; McDonald, Scott. A.; Das, Abhik; Tyson, Jon E.; Poindexter, Brenda B.; Schibler, Kurt; Bell, Edward F.; Heyne, Roy J.; Pedroza, Claudia; Bara, Rebecca; Van Meurs, Krisa P.; Grisby, Cathy; Petrie Huitema, Carolyn M.; Garg, Meena; Ehrenkranz, Richard A.; Shepherd, Edward G.; Chalak, Lina F.; Hamrick, Shannon E. G.; Khan, Amir M.; Reynolds, Anne Marie; Laughon, Matthew M.; Truog, William E.; Dysart, Kevin C.; Carlo, Waldemar A.; Walsh, Michele C.; Watterberg, Kristi L.; Higgins, Rosemary D.; Department of Pediatrics, Indiana University School of Medicine
IMPORTANCE Hypothermia at 33.5°C for 72 hours for neonatal hypoxic ischemic encephalopathy reduces death or disability to 44% to 55%; longer cooling and deeper cooling are neuroprotective in animal models. OBJECTIVE To determine if longer duration cooling (120 hours), deeper cooling (32.0°C), or both are superior to cooling at 33.5°C for 72 hours in neonates who are full-term with moderate or severe hypoxic ischemic encephalopathy. DESIGN, SETTING, AND PARTICIPANTS Arandomized, 2 × 2 factorial design clinical trial performed in 18 US centers in the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Neonatal Research Network between October 2010 and November 2013. INTERVENTIONS Neonates were assigned to 4 hypothermia groups; 33.5°C for 72 hours, 32.0°C for 72 hours, 33.5°C for 120 hours, and 32.0°C for 120 hours. MAIN OUTCOMES AND MEASURES The primary outcome of death or disability at 18 to 22 months is ongoing. The independent data and safety monitoring committee paused the trial to evaluate safety (cardiac arrhythmia, persistent acidosis, major vessel thrombosis and bleeding, and death in the neonatal intensive care unit [NICU]) after the first 50 neonates were enrolled, then after every subsequent 25 neonates. The trial was closed for emerging safety profile and futility analysis after the eighth review with 364 neonates enrolled (of 726 planned). This report focuses on safety and NICU deaths by marginal comparisons of 72 hours’ vs 120 hours’ duration and 33.5°C depth vs 32.0°C depth (predefined secondary outcomes). RESULTS The NICU death rates were 7 of 95 neonates (7%) for the 33.5°C for 72 hours group, 13 of 90 neonates (14%) for the 32.0°C for 72 hours group, 15 of 96 neonates (16%) for the 33.5°C for 120 hours group, and 14 of 83 neonates (17%) for the 32.0°C for 120 hours group. The adjusted risk ratio (RR) for NICU deaths for the 120 hours group vs 72 hours group was 1.37 (95% CI, 0.92–2.04) and for the 32.0°C group vs 33.5°C group was 1.24 (95% CI, 0.69–2.25). Safety outcomes were similar between the 120 hours group vs 72 hours group and the 32.0°C group vs 33.5°C group, except major bleeding occurred among 1% in the 120 hours group vs 3% in the 72 hours group (RR, 0.25 [95% CI, 0.07–0.91]). Futility analysis determined that the probability of detecting a statistically significant benefit for longer cooling, deeper cooling, or both for NICU death was less than 2%. CONCLUSIONS AND RELEVANCE Among neonates who were full-term with moderate or severe hypoxic ischemic encephalopathy, longer cooling, deeper cooling, or both compared with hypothermia at 33.5°C for 72 hours did not reduce NICU death. These results have implications for patient care and design of future trials.
Evaluating Overall Functioning Across Adaptive Domains in Children with Autism Spectrum Disorder: Implementation and Application of the Developmental Disabilities Modification of the Children's Global Assessment Scale (DD-CGAS)
(2023-08-04) Devarapalli, Baby Amulya; Neal, Tiffany; Deodhar, Aditi; Swiezy, Naomi
This practicum, completed at HANDS in Autism® in collaboration with the Indiana NeuroDiagnostic Institute (NDI), focused on evaluating overall functioning in adolescents with Autism Spectrum Disorder (ASD) using the Developmental Disabilities Modification of the Children's Global Assessment Scale (DD-CGAS). The study analyzed data from 58 patients across the pre-admission and post-discharge phases, with ratings assigned in key adaptive domains: Self-Care, Communication, Social Behavior, and School/Academic Functioning. Additional measures included Eating, Sleeping, and Dressing abilities. Data were extracted from the Cerner electronic health record system, cleaned and coded using REDCap, and analyzed using Python, Excel, and Power BI. By comparing DD-CGAS scores across age and gender groups, the project assessed the impact of integrated, patient-centered inpatient care on behavioral functioning. Findings support the utility of structured, quantitative behavioral assessments in improving treatment planning and measuring intervention outcomes in ASD-focused psychiatric settings.
Evaluating Provider Training and Consumer Outcomes in Healthcare for Individuals with Autism
(2023-08) Bompalli, Keerthana Reddy; Neal, Tiffany; Swiezy, Naomi
This project focused on improving provider-consumer engagement through evidence-based data practices. As part of the HANDS Innovation Pilot Project (IPP), the student led efforts to design surveys, clean and manage data, and conduct statistical analyses using REDCap, R, and Excel. The primary goal was to identify systemic gaps in provider training and service accessibility for individuals with developmental disabilities, including Autism Spectrum Disorder (ASD). Survey data were analyzed to visualize areas for strategic improvement, focusing on enhancing care quality, provider training, and service delivery outcomes. The practicum emphasized data integrity, cross-agency collaboration, and real-world application of analytics for health systems improvement. Key contributions included identifying needs within the waiver application process and designing educational solutions to support individuals with ASD and their caregivers across Indiana.
Exploring the influence of adoption status on support system utilization in children with autism spectrum disorder (ASD)
(2024-05) Sharma, Kanishkaa; Neal, Tiffany; Deodhar, Aditi; Devarapalli, Baby Amulya; Swiezy, Naomi
This study investigates how adoption status influences the use of support systems, specifically Individualized Education Programs (IEPs) and Family Support Waivers (FSWs), among children with Autism Spectrum Disorder (ASD). Analysis of patient data revealed that biological families utilize these services more frequently than adoptive families. The findings highlight potential disparities in access and call for further research to understand and address the unique challenges faced by adoptive families in supporting children with ASD.

Browsing by Subject "Developmental Disabilities"

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