Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Network Construction and Graph Theoretical Analysis of Functional Language Networks in Pediatric Epilepsy

This dissertation introduces a new approach for assessing the effects of pediatric epilepsy on the language connectome. Two novel data-driven network construction approaches are presented. These methods rely on connecting different brain regions using either extent or intensity of language related activations as identified by independent component analysis of fMRI data. An auditory description decision task (ADDT) paradigm was used to activate the language network for 29 patients and 30 controls recruited from three major pediatric hospitals. Empirical evaluations illustrated that pediatric epilepsy can cause, or is associated with, a network efficiency reduction. Patients showed a propensity to inefficiently employ the whole brain network to perform the ADDT language task; on the contrary, controls seemed to efficiently use smaller segregated network components to achieve the same task. To explain the causes of the decreased efficiency, graph theoretical analysis was carried out. The analysis revealed no substantial global network feature differences between the patient and control groups. It also showed that for both subject groups the language network exhibited small-world characteristics; however, the patient’s extent of activation network showed a tendency towards more random networks. It was also shown that the intensity of activation network displayed ipsilateral hub reorganization on the local level. The left hemispheric hubs displayed greater centrality values for patients, whereas the right hemispheric hubs displayed greater centrality values for controls. This hub hemispheric disparity was not correlated with a right atypical language laterality found in six patients. Finally it was shown that a multi-level unsupervised clustering scheme based on self-organizing maps, a type of artificial neural network, and k-means was able to fairly and blindly separate the subjects into their respective patient or control groups. The clustering was initiated using the local nodal centrality measurements only. Compared to the extent of activation network, the intensity of activation network clustering demonstrated better precision. This outcome supports the assertion that the local centrality differences presented by the intensity of activation network can be associated with focal epilepsy.

Pseudoangiomatous Stromal Hyperplasia in Pediatric Age: A Case Report and Review of Literature

Pseudoangiomatous stromal hyperplasia (PASH) is a rare benign disease, characterized by abnormal proliferation of fibroglandular stroma. It was first described in 1986. The authors present a case of a twelve year-old girl with a history of kidney transplantation due to nephrotic syndrome with rapidly progressive and painful breast asymmetry with approximately six months duration. No lymphadenopathy or other signs or symptoms were associated. Ultrasound didn’t reveal specific findings. Breast magnetic resonance (MR) showed a massive heterogeneous nodular mass with regular contours and contrast enhancement. Given the degree of breast asymmetry as well as the patient’s symptoms, surgical excision of the tumor was preferred over core biopsy. Histopathological and immunohistochemical examination showed pseudoangiomatous stromal hyperplasia. The authors describe the clinical presentation, imaging and histological features as well as therapeutic approach in these patients

Assessment of resting energy expenditure in pediatric mitochondrial diseases with indirect calorimetry

Mitochondrial diseases (MD) are the most frequent inborn errors of metabolism. In affected tissues, MD can alter cellular oxygen consumption rate leading to potential decreases in whole-body resting energy expenditure (REE), but data on pediatric children are absent. We determined, using indirect calorimetry (IC), whole-body oxygen consumption (VO2), carbon dioxide production (VCO2), respiratory quotient (RQ) and REE in pediatric patients with MD and healthy controls. Another goal was to assess the accuracy of available predictive equations for REE estimation in this patient population. IC data were obtained under fasting and resting conditions in 20 MD patients and 27 age and gender-matched healthy peers. We determined the agreement between REE measured with IC and REE estimated with Schofield weight and FAO/WHO/UNU equations. Mean values of VO2, VCO2 (mL·min-1·kg-1) or RQ did not differ significantly between patients and controls (P = 0.085, P = 0.055 and P = 0.626 respectively). Accordingly, no significant differences (P = 0.086) were found for REE (kcal·day-1 kg-1) either. On the other hand, although we found no significant differences between IC-measured REE and Schofield or FAO/WHO/UNU-estimated REE, Bland-Altman analysis revealed wide limits of agreement and there were some important individual differences between IC and equation-derived REE. VO2, VCO2, RQ and REE are not significantly altered in pediatric patients with MD compared with healthy controls. The energy demands of pediatric patients with MD should be determined based on IC data in order to provide the best possible personalized nutritional management for these children.

Exercise intervention in pediatric patients with solid tumors: The PAPEC trial

The randomized controlled trial ‘Physical Activity in Pediatric Cancer’ (PAPEC) determined the effects of an in-hospital exercise intervention combining aerobic and muscle strength training on pediatric cancer patients with solid tumors undergoing neoadjuvant chemotherapy. Methods. Participants were allocated to an exercise (n=24, 17 boys; mean±SEM age 10±1y) or control group (n=25, 18 boys; 11±1y). Training included three sessions/week for 19±2 weeks. Participants were assessed at treatment initiation, termination, and two months after end-treatment. The primary endpoint was muscle strength (as assessed by upper and lower-body five-repetition-maximum (5RM) tests). Secondary endpoints included cardiorespiratory fitness, functional capacity during daily life activities, physical activity, body mass and body mass index, and quality of life. Results. Most sessions were performed in the hospital’s gymnasium. Adherence to the program averaged 68±4% and no major adverse events or health issues were noted. A significant interaction (group*time) effect was found for all 5RM tests. Performance significantly increased after training (leg press: 40% (95% CI=15–41 kg); bench press: 24% (95% CI=6–14 kg); lateral row 25% (95%CI=6–15 kg)), whereas an opposite trend was found in controls. Two-month post values tended to be higher than baseline for leg (P=0.017) and bench press (P=0.014). In contrast, no significant interaction effect was found for any of the secondary endpoints. Conclusion. An in-hospital exercise program for pediatric cancer patients with solid tumors undergoing neoadjuvant treatment increases muscle strength despite the aggressiveness of such therapy. Key words: Cancer, exercise, muscle strength, fitness, quality of life.

Virtual knowledge brokering : describing the roles and strategies used by knowledge brokers in a pediatric physiotherapy virtual community of practice

Introduction: Knowledge transfer in pediatric rehabilitation is challenging and requires active, multifaceted strategies. The use of knowledge brokers (KBs) is one such strategy noted to promote clinician behavior change. The success of using KBs to transfer knowledge relies on their ability to adapt to ever-changing clinical contexts. In addition, with the rapid growth of online platforms as knowledge transfer forums, KBs must become effective in virtual environments. Although the role of KBs has been studied in various clinical contexts, their emerging role in specific online environments designed to support evidence-based behavior change has not yet been described. Our objective is to describe the roles of, and strategies used by, four KBs involved in a virtual community of practice to guide and inform future online KB interventions. Methods: A descriptive design guided this study and a thematic content analysis process was used to analyze online KB postings. The Promoting Action on Research in Health Sciences knowledge transfer framework and online andragogical learning theories assisted in the coding. A thematic map was created illustrating the links between KBs' strategies and emerging roles in the virtual environment. Results: We analyzed 95 posts and identified three roles: 1) context architect: promoting a respectful learning environment, 2) knowledge sharing promoter: building capacity, and 3) linkage creator: connecting research-to-practice. Strategies used by KBs reflected invitational, constructivism, and connectivism approaches, with roles and strategies changing over time. Discussion: This study increases our understanding of the actions of KBs in virtual contexts to foster uptake of research evidence in pediatric physiotherapy. Our results provide valuable information about the knowledge and skills required by individuals to fulfill this role in virtual environments.

Nursing students' perceptions of community pediatric experiences.

Over the last decade health care delivery has shifted from hospitals to the community resulting in a significant reduction of hospital-based clinical placements for nursing students to practice and learn. Studies have emerged describing this problem and outlining the ways in which Colleges and Universities have attempted to deal with the acute shortage of clinical areas in nursing and other health care programs. Several studies describe the development of community-based clinical experiences, and some of these examinated students' perceptions. One finding appears to be constant: student perceptions of community experiences have an effect on their settings both to contend with the shortage of hospital-based placements and to prepare students for future practice.

Health-related quality of life in obese children and adolescents

Objective: This review addresses the effect of overweight and obese weight status on pediatric health-related quality of life (HRQOL). Method: Web of Science, Medline, CINAHL, Cochrane Library, EMBASE, AMED and PubMed were searched for peer-reviewed studies in English reporting HRQOL and weight status in youth (<21 years), published before March 2008. Results: Twenty-eight articles were identified. Regression of HRQOL against body mass index (BMI) using pooled data from 13 studies utilizing the Pediatric Quality of Life Inventory identified an inverse relationship between BMI and pediatric HRQOL (r=−0.7, P=0.008), with impairments in physical and social functioning consistently reported. HRQOL seemed to improve with weight loss, but randomized controlled trials were few and lacked long-term follow-up. Conclusions: Little is known about the factors associated with reduced HRQOL among overweight or obese youth, although gender, age and obesity-related co-morbidities may play a role. Few studies have examined the differences in HRQOL between community and treatment-seeking samples. Pooled regressions suggest pediatric self-reported HRQOL can be predicted from parent proxy reports, although parents of obese youths tend to perceive worse HRQOL than children do about themselves. Thus, future research should include both pediatric and parent proxy perspectives.

Factors influencing paediatric nurses' responses to medication administration

Objective: To evaluate the importance of contextual and policy factors on nurses’ judgment about medication administration practice.---------- Design: A questionnaire survey of responses to a number of factorial vignettes in June 2004. These vignettes considered a combination of seven contextual and policy factors that were thought to influence nurses’ judgments relating to medication administration.---------- Participants: 185 (67% of eligible) clinical paediatric nursing staff returned completed questionnaires.--------- Setting: A tertiary paediatric hospital in Brisbane, Australia.---------- Results: Double checking the patient, double checking the drug and checking the legality of the prescription were the three strongest predictors of nurses’ actions regarding medication administration.--------- Conclusions: Policy factors and not contextual factors drive nurses’ judgment in response to hypothetical scenarios.

Trauma and Injury Severity Score (TRISS) coefficients 2009 revision

Background: Currently used Trauma and Injury Severity Score (TRISS) coefficients, which measure probability of survival (Ps), were derived from the Major Trauma Outcome Study (MTOS) in 1995 and are now unlikely to be optimal. This study aims to estimate new TRISS coefficients using a contemporary database of injured patients presenting to emergency departments in the United States; and to compare these against the MTOS coefficients.---------- Methods: Data were obtained from the National Trauma Data Bank (NTDB) and the NTDB National Sample Project (NSP). TRISS coefficients were estimated using logistic regression. Separate coefficients were derived from complete case and multistage multiple imputation analyses for each NTDB and NSP dataset. Associated Ps over Injury Severity Score values were graphed and compared by age (adult ≥ 15 years; pediatric < 15 years) and injury mechanism (blunt; penetrating) groups. Area under the Receiver Operating Characteristic curves was used to assess coefficients’ predictive performance.---------- Results: Overall 1,072,033 NTDB and 1,278,563 weighted NSP injury events were included, compared with 23,177 used in the original MTOS analyses. Large differences were seen between results from complete case and imputed analyses. For blunt mechanism and adult penetrating mechanism injuries, there were similarities between coefficients estimated on imputed samples, and marked divergences between associated Ps estimated and those from the MTOS. However, negligible differences existed between area under the receiver operating characteristic curves estimates because the overwhelming majority of patients had minor trauma and survived. For pediatric penetrating mechanism injuries, variability in coefficients was large and Ps estimates unreliable.---------- Conclusions: Imputed NTDB coefficients are recommended as the TRISS coefficients 2009 revision for blunt mechanism and adult penetrating mechanism injuries. Coefficients for pediatric penetrating mechanism injuries could not be reliably estimated.

Case-control study of early childhood caries in Australia

The aim of this case-control study of 617 children was to investigate early childhood caries (ECC) risk indicators in a non-fluoridated region in Australia. ECC cases were recruited from childcare facilities, public hospitals and private specialist clinics to source children from different socioeconomic backgrounds. Non-ECC controls were recruited from the same childcare facilities. A multinomial logistic modelling approach was used for statistical analysis. The results showed that a large percentage of children tested positive for Streptococcus mutans if their mothers also tested positive. A common risk indicator found in ECC children from childcare facilities and public hospitals was visible plaque (OR 4.1, 95% CI 1.0-15.9, and OR 8.7, 95% CI 2.3-32.9, respectively). Compared to ECC-free controls, the risk indicators specific to childcare cases were enamel hypoplasia (OR 4.2, 95% CI 1.0-18.3), difficulty in cleaning child's teeth (OR 6.6, 95% CI 2.2-19.8), presence of S. mutans (OR 4.8, 95% CI 0.7-32.6), sweetened drinks (OR 4.0, 95% CI 1.2-13.6) and maternal anxiety (OR 5.1, 95% CI 1.1-25.0). Risk indicators specific to public hospital cases were S. mutans presence in child (OR 7.7, 95% CI 1.3-44.6) or mother (OR 8.1, 95% CI 0.9-72.4), ethnicity (OR 5.6, 95% CI 1.4-22.1), and access of mother to pension or health care card (OR 20.5, 95% CI 3.5-119.9). By contrast, a history of chronic ear infections was found to be protective for ECC in childcare children (OR 0.28, 95% CI 0.09-0.82). The biological, socioeconomic and maternal risk indicators demonstrated in the present study can be employed in models of ECC that can be usefully applied for future longitudinal studies.

A new future for growth factor complexes as wound therapies?

Background: Topical administration of growth factors (GFs) has displayed some potential in wound healing, but variable efficacy, high doses and costs have hampered their implementation. Moreover, this approach ignores the fact that wound repair is driven by interactions between multiple GFs and extracellular matrix (ECM) proteins. The Problem: Deep dermal partial thickness burn (DDPTB) injuries are the most common burn presentation to pediatric hospitals and also represent the most difficult burn injury to manage clinically. DDPTB often repair with a hypertrophic scar. Wounds that close rapidly exhibit reduced scarring. Thus treatments that shorten the time taken to close DDTPB’s may coincidently reduce scarring. Basic/Clinical Science Advances: We have observed that multi-protein complexes comprised of IGF and IGF-binding proteins bound to the ECM protein vitronectin (VN) significantly enhance cellular functions relevant to wound repair in human skin keratinocytes. These responses require activation of both the IGF-1R and the VN-binding αv integrins. We have recently evaluated the wound healing potential of these GF:VN complexes in a porcine model of DDTPB injury. Clinical Care Relevance: This pilot study demonstrates that GF:VN complexes hold promise as a wound healing therapy. Enhanced healing responses were observed after treatment with nanogram doses of the GF:VN complexes in vitro and in vivo. Critically healing was achieved using substantially less GF than studies in which GFs alone have been used. Conclusion: These data suggest that coupling GFs to ECM proteins, such as VN, may ultimately prove to be an improved technique for the delivery of novel GF-based wound therapies.

Expression of chondromodulin-1 in the temporomandibular joint condylar cartilage and disc

BACKGROUND: The temporomandibular joint (TMJ) cartilage consists of condylar cartilage and disc and undergoes continuous remodeling throughout post-natal life. To maintain the integrity of the TMJ cartilage, anti-angiogenic factors play an important role during the remodeling process. In this study, we investigated the expression of the anti-angiogenic factor, chondromodulin- 1 (ChM-1), in TMJ cartilage and evaluate its potential role in TMJ remodeling. METHODS: Eight TMJ specimens were collected from six 4-month-old Japanese white rabbits. Safranin-O staining was performed to determine proteoglycan content. ChM-1 expression in TMJ condylar cartilage and disc was determined by immunohistochemistry. Three human perforated disc tissue samples were collected for investigation of ChM-1 and vascular endothelial growth factor (VEGF) distribution in perforated TMJ disc. RESULTS: Safranin-O stained weakly in TMJ compared with tibial articular and epiphyseal cartilage. In TMJ, ChM-1 was expressed in the proliferative and hypertrophic zone of condylar cartilage and chondrocyte-like cells in the disc. No expression of ChM-1 was observed in osteoblasts and subchondral bone. ChM-1 and VEGF were both similarly expressed in perforated disc tissues. CONCLUSIONS: ChM-1 may play a role in the regulation of TMJ remodeling by preventing blood vessel invasion of the cartilage, thereby maintaining condylar cartilage and disc integrity.