Rochester, NY, United States
Rochester, NY, United States

Time filter

Source Type

PubMed | Red Cross, Semmelweis University, University of Calgary, Hospital Sant Joan Of Deu and 47 more.
Type: | Journal: Pediatric rheumatology online journal | Year: 2015

Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases.We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY) to Simple Measure of Impact of Illness in Youngsters (SMILY-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n=15) and 17 parents participated. The mean age was 124 years, with median disease duration of 21 months (1-172 months). We translated SMILY-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa.SMILY-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY-Illness with its available translations may be used as useful adjuncts to clinical practice and research.


Perry S.B.,Chatham University | Woollard J.,Chatham University | Little S.,Health South Harmarville Rehabilitation Hospital | Shroyer K.,Childrens Institute
Journal of Head Trauma Rehabilitation | Year: 2014

Objective: To examine the relationship among measures of gait, balance, and community integration in adults with brain injury. Setting: Two rehabilitation hospitals. Participants: Thirty-four community-dwelling individuals with brain injury, aged 18 to 61 years (mean = 32 years), who were able to walk at least 12 m independently or with supervision. Mean time post-brain injury was 52 ± 44 months. Design: Cross-sectional study. Main Measures: Community Balance and Mobility Scale, Dynamic Gait Index, Ten-Meter Walk Test for gait speed, and the Community Integration Questionnaire (CIQ). Results: Mean balance and gait scores were as follows: 54 ± 26 of 96 on the Community Balance and Mobility Scale; 19 ± 5 of 24 on the Dynamic Gait Index; and gait speed of 1.36 ± 0.88 m/s. Mean score on the CIQ was 16 ± 5 of 29. Correlations between the balance/gait measures and the total CIQ score ranged from 0.21 to 0.30 and were not significant. All 3 balance/gait measures correlated significantly with the CIQ Productivity subscale (range = 0.38-0.52). Conclusions: The ability of people with brain injury to engage in work/school/volunteer activity may be reduced by impairments in balance and mobility. Future research should explore this relationship and determine whether interventions that improve balance and mobility result in improved community productivity. Copyright © 2014 Wolters Kluwer Health.


Koehler A.D.,University of Rochester | Fagnano M.,University of Rochester | Montes G.,Childrens Institute | Halterman J.S.,University of Rochester
Maternal and Child Health Journal | Year: 2014

To evaluate how having a child with both persistent asthma and a developmental disability (DD) affects caregiver burden and quality of life (QOL). 3-10 year old children with persistent asthma in urban Rochester, NY. Cross-sectional baseline survey (2006-2009). Parent report of autism spectrum disorder or other behavioral disorder requiring medication. Caregiver burden and QOL as measured by scores on previously validated depression, parenting confidence, and asthma-related QOL scales as well as an assessment of competing demands on the caregiver. Bivariate and multivariate regression analyses controlling for caregiver age, education, marital status, race, ethnicity, and child asthma symptom severity. We enrolled 530 children as part of a larger study (response rate: 74; 63 % Black, 73 % Medicaid). Of this sample, 70 children (13 %) were defined as having a DD. There were no differences in asthma symptom severity between children with and without a DD diagnosis. However, even after adjusting for potential confounders, caregivers of children with a DD reported worse scores on the depression (p = .003), parenting confidence (p < .001), and competing demands (p = .013) scales and worse asthma-related QOL (p = .035) compared to caregivers of typically developing children with asthma. Despite having similar asthma symptom severity, caregivers of children with both persistent asthma and a DD diagnosis report more burden and lower QOL compared to that of caregivers of typically developing children and persistent asthma. Further attention to this subgroup is needed to promote optimal support for caregivers. © 2014 Springer Science+Business Media New York.


Montes G.,Childrens Institute | Montes G.,St. John Fisher College | Montes G.,University of Rochester | Lotyczewski B.S.,Childrens Institute | And 3 more authors.
European Journal of Pediatrics | Year: 2012

The impact of behavior problems on kindergarten readiness is not known. Our objective was to estimate the association between behavior problems and kindergarten readiness on a US national sample. In the US educational system, kindergarten is a natural point of entry into formal schooling at age 5 because fewer than half of the children enter kindergarten with prior formal preschool education. Parents of 1,200 children who were scheduled to enter kindergarten for the first time and were members of the Harris Interactive online national panel were surveyed. We defined behavior problems as an affirmative response to the question, "Has your child ever had behavior problems?" We validated this against attention deficit hyperactivity disorder diagnosis, scores on a reliable socioemotional scale, and child's receipt of early intervention services. We used linear, tobit, and logistic regression analyses to estimate the association between having behavior problems and scores in reliable scales of motor, play, speech and language, and school skills and an overall kindergarten readiness indicator. The sample included 176 children with behavior problems for a national prevalence of 14% (confidence interval, 11.5-17.5). Children with behavior problems were more likely to be male and live in households with lower income and parental education. We found that children with behavior problems entered kindergarten with lower speech and language, motor, play, and school skills, even after controlling for demographics and region. Delays were 0.6-1 SD below scores of comparable children without behavior problems. Parents of children with behavior problems were 5.2 times more likely to report their child was not ready for kindergarten. Childhood behavior problems are associated with substantial delays in motor, language, play, school, and socioemotional skills before entrance into kindergarten. Early screening and intervention is recommended. © Springer-Verlag 2011.


Halterman J.S.,University of Rochester | Sauer J.,University of Rochester | Fagnano M.,University of Rochester | Montes G.,Childrens Institute | And 4 more authors.
Journal of Asthma | Year: 2012

Objective. We previously conducted the School-Based Asthma Therapy trial to improve adherence to national asthma guidelines for urban children through directly observed administration of preventive asthma medications in school. The trial successfully improved outcomes among these children; however, several factors limit its potential for dissemination. To enhance sustainability, we subsequently developed a new model of care using web-based guides for efficient communications and integration within school and community systems. This article describes the development of the School-Based Preventive Asthma Care Technology (SB-PACT) trial. Method. We developed the SB-PACT web-based system based on stakeholder feedback, and conducted a pilot randomized trial with 100 children to establish its feasibility in facilitating preventive asthma care for high-risk children. The SB-PACT system represents a new model of care using web-based guides for asthma symptom screening, follow-up control assessments, and electronic communications with providers. Result. We enrolled and successfully screened all children using the web-based system. Most providers used the electronic communication system without difficulty, and the majority of children in the intervention group received preventive medications through school as planned and dose adjustments as needed. Several challenges to implementation also were encountered. Conclusions. This program is designed to promote sustainability of school-based asthma care, reduce program costs, and ultimately succeed in a real-world setting. With further refinements, it has the potential to be implemented nationally in schools. © 2012 Informa Healthcare USA, Inc.


Montes G.,Childrens Institute | Montes G.,University of Rochester | Montes G.,St. John Fisher College | Halterman J.S.,Childrens Institute | And 2 more authors.
Academic Pediatrics | Year: 2011

Objectives: Many parents struggle to secure high-quality, consistent child care services, and this may impact employment decisions. Our objectives were to determine the type of employment problems that parents attribute to difficulties in securing child care and to identify whether having a child with behavior problems and/or chronic illness is independently associated with child care-related employment problems in the United States. Methods: This study included parents of children aged 0 to 13 years by using household-level sampling from the nationally representative random digit dial survey Gallup panel. We included 9 measures of child care-related employment problems. Poststratification weights were applied based on census region, income, and education by using Stata's poststratification commands. Results: A survey was conducted of 1431 households with at least 1 parent employed. Overall, 46% of households reported 1 or more child care-related employment change. Being absent from work (21%) and changing the work schedule (27%) were the most prevalent changes reported. Two-parent households were significantly less likely to report child care-related employment changes compared with single parent households. Households with a stay-at-home parent were less likely to report child care-related absenteeism but more likely to report recently quitting work compared with households without a stay-at-home parent. Having a child with behavior problems or a serious chronic health condition was associated with double to triple odds of many child care-related employment problems. Conclusions: Child care-related employment problems are common among families with a child with chronic illness or behavior problems. These findings support the need for pediatricians and policy makers to strive for the implementation of more parent-friendly labor conditions. Copyright © 2011 by Academic Pediatric Association.


Crean H.F.,University of Rochester | Johnson D.B.,Childrens Institute
American Journal of Community Psychology | Year: 2013

This study reports on aggressive outcomes from a cluster randomized trial of the Promoting Alternative Thinking Strategies (PATHS) curriculum. Fourteen elementary schools were randomly assigned to intervention or control condition and third grade students were followed through the fifth grade. Teacher and self-reports of student aggression, conduct problems, delinquency, acting out problems, and social information processing (SIP) variables were collected. Linear change for each of the SIP variables was noted with control students demonstrating increased normative beliefs about aggression, increased aggressive social problem solving, increased hostile attribution bias, and increased aggressive interpersonal negotiation strategies over time while PATHS students remained relatively stable. Teachers reported significant curvilinear change in student aggression, conduct problems, and acting out behavior problems; all favoring PATHS students. © 2013 Society for Community Research and Action.


Halterman J.S.,University of Rochester | Fagnano M.,University of Rochester | Montes G.,Childrens Institute | Fisher S.,University of Rochester | And 4 more authors.
Journal of Pediatrics | Year: 2012

Objective: To test the feasibility and preliminary effectiveness of the School-Based Preventive Asthma Care Technology (SB-PACT) program, which includes directly observed therapy of preventive asthma medications in school facilitated by Web-based technology for systematic symptom screening, electronic report generation, and medication authorization from providers. Study design: We conducted a pilot randomized trial of SB-PACT versus usual care with 100 children (aged 3-10 years) from 19 inner-city schools in Rochester, New York. Outcomes were assessed longitudinally by blinded interviewers. Analyses included bivariate statistics and linear regression models, adjusting for baseline symptoms. Results: There were data for 99 subjects for analysis. We screened all children using the Web-based system, and 44 of 49 treatment group children received directly observed therapy as authorized by their providers. Treatment group children received preventive medications 98% of the time they were in school. Over the school year, children in the treatment group experienced nearly 1 additional symptom-free day over 2 weeks versus the usual care group (11.33 vs 10.40, P =.13). Treatment children also experienced fewer nights with symptoms (1.68 vs 2.20, P =.02), days requiring rescue medications (1.66 vs 2.44, P =.01), and days absent from school due to asthma (0.37 vs 0.85, P =.03) compared with usual care. Further, treatment children had a greater decrease in exhaled nitric oxide (-9.62 vs -0.39, P =.03), suggesting reduction in airway inflammation. Conclusion: The SB-PACT intervention demonstrated feasibility and improved outcomes across multiple measures in this pilot study. Future work will focus on further integration of preventive care delivery across community and primary care systems. Copyright © 2012 Mosby Inc. All rights reserved.


Guarnaccia S.,Centro Io e LAsma | Holliday C.N.,Windber Research Institute | D'Agata E.,Centro Io e LAsma | Pluda A.,Centro Io e LAsma | And 6 more authors.
Allergy and Asthma Proceedings | Year: 2016

Background: Asthma is the leading chronic condition among children. Given this international burden, clinicians and public health professionals applied the Expanded Chronic Care Model to address health adversities of pediatric patients with asthma. Objective: This study examined the influence of a clinical health promotion initiative on asthma control and appropriate medication management among pediatric patients. Methods: Patients (n = 304) were recruited and screened for participation in this study. All the patients participated in a motivational interview, received clinical care, and were monitored longitudinally. Eligible patients (n = 53) were referred to one or more intervention pathways regarding physical activity, nutrition, smoking cessation, and psychosocial wellness. A comparison group (n = 90) was eligible for an intervention but chose not to participate. This analysis focused on patients who were identified as needing a health intervention beyond asthma clinical care. Results: Among patients who were invited to participate in the health promotion pathways, significant decreases in asthma exacerbation were achieved by the patients who participated in the intervention compared with those who did not participate (p < 0.018). Significant improvements in asthma exacerbation, activity limitations, and asthma control were attributed to the time in clinical care (p < 0.001). In this group, asthma control significantly improved with medication (p < 0.002), and age was associated with a significant decrease in asthma exacerbation (p < 0.011). Conclusions: This pilot study demonstrated preliminary benefits in a child asthma population. In addition, this experience addressed the chronicity of pediatric asthma through patient-centered care. Copyright © 2016, OceanSide Publications, Inc., U.S.A.


PubMed | Childrens Institute
Type: Journal Article | Journal: European journal of pediatrics | Year: 2012

The impact of behavior problems on kindergarten readiness is not known. Our objective was to estimate the association between behavior problems and kindergarten readiness on a US national sample. In the US educational system, kindergarten is a natural point of entry into formal schooling at age 5 because fewer than half of the children enter kindergarten with prior formal preschool education. Parents of 1,200 children who were scheduled to enter kindergarten for the first time and were members of the Harris Interactive online national panel were surveyed. We defined behavior problems as an affirmative response to the question, Has your child ever had behavior problems? We validated this against attention deficit hyperactivity disorder diagnosis, scores on a reliable socioemotional scale, and childs receipt of early intervention services. We used linear, tobit, and logistic regression analyses to estimate the association between having behavior problems and scores in reliable scales of motor, play, speech and language, and school skills and an overall kindergarten readiness indicator. The sample included 176 children with behavior problems for a national prevalence of 14% (confidence interval, 11.5-17.5). Children with behavior problems were more likely to be male and live in households with lower income and parental education. We found that children with behavior problems entered kindergarten with lower speech and language, motor, play, and school skills, even after controlling for demographics and region. Delays were 0.6-1 SD below scores of comparable children without behavior problems. Parents of children with behavior problems were 5.2 times more likely to report their child was not ready for kindergarten. Childhood behavior problems are associated with substantial delays in motor, language, play, school, and socioemotional skills before entrance into kindergarten. Early screening and intervention is recommended.

Loading Childrens Institute collaborators
Loading Childrens Institute collaborators