The management of feeding difficulties in children with cerebral palsy in Bangladesh

The majority of children with Cerebral Palsy (CP) have feeding difficulties, which result in chronic malnutrition and respiratory disease, reducing quality of life for caregiver and child, and causing early child mortality. In well-resourced countries, high and low-tech medical interventions, ranging from gastrostomy tube-feeding to parent training, are available. In Bangladesh the former is not viable and the latter is both scarce and its effectiveness not evaluated. The study aimed to evaluate the effectiveness of a training programme to improve the feeding practices of carers of children with CP, observing the impact on level of nutritional intake, risk of aspiration and distress caused to both during feeding. Thirty-seven caregivers and their children aged 1-11 with moderate-severe CP and feeding difficulties were invited to a six-session training programme. Pre and post measures (quantitative and qualitative) were taken during home visits in addition to giving brief advice. A control phase was evaluated for 12 of the participant pairs whilst awaiting training. A minimum of four training sessions was successful in significantly improving children’s nutritional intake and chest health, maximising independence in feeding, improving the experience of mealtimes for both child and caregiver, decreasing caregiver stress regarding their child’s feeding difficulties and improving child levels of cooperation. Catch-up growth was observed in 26% of the children. A significant difference in the outcomes between advice only and groups was observed. In conclusion, carers in Bangladesh, who have minimal formal education and live in abject poverty are able to change care-giving practices significantly after four training sessions, with positive consequences for both child and caregiver. Methods of providing affordable food supplementation need to be investigated and further steps must to be taken to lobby policy-makers in order to ensure that services have the motivation and capacity to address this area of need

Advances in paediatrics in 2016: Current practices and challenges in allergy, autoimmune diseases, cardiology, endocrinology, gastroenterology, infectious diseases, neonatology, nephrology, neurology, nutrition, pulmonology

Abstract This review reports main progresses in various pediatric issues published in Italian Journal of Pediatrics and in international journals in 2016. New insights in clinical features or complications of several disorders may be useful for our better understanding. They comprise severe asthma, changing features of lupus erythematosus from birth to adolescence, celiac disease, functional gastrointestinal disorders, Moebius syndrome, recurrent pneumonia. Risk factors for congenital heart defects, Kawasaki disease have been widely investigated. New diagnostic tools are available for ascertaining brucellosis, celiac disease and viral infections. The usefulness of aCGH as first-tier test is confirmed in patients with neurodevelopmental disorders. Novel information have been provided on the safety of milk for infants. Recent advances in the treatment of common disorders, including neonatal respiratory distress syndrome, hypo-glycemia in newborns, atopic dermatitis, constipation, cyclic vomiting syndrome, nephrotic syndrome, diabetes mellitus, regurgitation, short stature, secretions in children with cerebral palsy have been reported. Antipyretics treatment has been updated by national guidelines and studies have excluded side effects (e.g. asthma risk during acetaminophen therapy). Vaccinations are a painful event and several options are reported to prevent this pain. Adverse effects due to metabolic abnormalities are reported for second generation antipsychotic drugs

Improving knowledge of outcomes in neonatology

Background: An outcome is a measured effect a treatment has on an individual, but in other fields problems have been identified with how outcomes are selected, collected, reported and interpreted. Core outcomes sets (a minimum set of essential outcomes reported by all related research) have been developed using consensus methods to address these problems. There has been no systematic evaluation of the importance of outcomes in neonatal research. Aims: Improve understanding of the importance of outcomes to neonatal research. Methods: Two systematic reviews identifying outcomes from neonatal trials and qualitative research were completed. The results of these reviews informed a consensus process, which included a Delphi survey, to identify a core outcomes set. The Delphi results were also used to analyse how groups prioritise outcomes and how methodological approaches affect core outcomes set development. Finally, the core outcomes set and population-level data were used to explore how early parenteral nutrition use affects outcomes in very preterm neonates in a retrospective cohort study using propensity score matching. Results: In 76 neonatal trials, 216 outcomes were reported using 889 measures; 146 outcomes were identified in 62 qualitative studies. These outcomes were scored by importance by 414 former patients, parents, healthcare professionals and researchers: the final core outcomes set included 12 outcomes. Delphi results showed stakeholder groups prioritise different outcomes. Data from 16, 292 matched very premature neonates showed that those given PN in the first postnatal week had higher rates of survival (absolute increase 0.91%; confidence interval 0.53, 1.30), but increased morbidity. Conclusions: Outcomes are inconsistently reported in neonatal trials: different outcomes are discussed in qualitative research. The core outcomes set will ensure research outcomes meet the priorities of different groups: I have demonstrated its utility in observational research. Keywords: Outcomes, systematic review, Delphi survey, core outcomes setOpen Acces

The Effect of Antenatal Magnesium Sulphate for Fetal Neuroprotection in Threatened Preterm Labour: A Prospective Cohort Study

Due to the advances in perinatal care, the survival rate of premature babies is also increasing. This lead to the increase in the learning disabilities, medical disabilities, behavioral and psychological problems among these surviving premature babies. The risk of neurological impairments such as cerebral palsy, blindness, deafness, and cognitive dysfunction are high in preterm babies. Magnesium sulphate used as the seizure prophylaxis in severe pre-eclamptic women and as a tocolytic found to have neuroprotective action in the preterm babies. Several studies concluded that exposure to both antenatal corticosteroids and magnesium sulphate was associated with lower rates of severe neurodevelopmental impairment or mortality.To determine the role of magnesium sulphate given for fetal neuro protection to women at risk of preterm birth in preventing neonatal mortality and neuro developmental morbidity

The validation of a screening tool for the identification of feeding and swallowing difficulties in the paediatric population aged 0-2 years admitted to general medical wards

Background: Feeding and swallowing difficulties (FSD) have been found in typically developing children as well as in children with complex medical conditions and developmental disabilities. These difficulties cause negative health consequences such as aspiration pneumonia, chronic lung disease, failure to thrive, prolonged hospital stay and even death. The early identification and management of feeding and swallowing difficulties is important as it prevents the negative effects on health and quality of life. Hence, there is a need for a validated screening tool to use in the general hospitalized paediatric population. Research Aims: The aim of this study was to validate the Feeding and Swallowing Questionnaire as a screening tool, in the paediatric population aged 0 – 2 years admitted to general medical wards. The secondary aim was to describe the FSD presenting in the paediatric population aged 0 - 2 years who are hospitalized in the general medical wards. Methodology: A prospective, descriptive, clinimetric design was utilized. A sample of 107 participants admitted to the general medical wards at Steve Biko Academic Hospital were included in the study. Participants’ feeding and swallowing was screened by a research assistant using the Feeding and Swallowing Questionnaire. After the screening, a clinical feeding and swallowing assessment was conducted for comparison, the assessment was conducted by the student researcher using the Clinical Feeding and Swallowing Assessment Tool. Results: There was a 27% FSD prevalence, with the majority of cases (92%) occurring in children under one year of age. One hundred and three children (63% male; median (IQR) age 5.2 (2.1 – 12.8) months) underwent screening and clinical assessment for feeding and swallowing disorders. The criterion validity of the Feeding and swallowing Questionnaire was established with a sensitivity of 88% and a specificity of 32%. Internal consistency was achieved with an acceptable Cronbach’s alpha of 0.79, and good inter-rater reliability (80%). Participants presented with feeding difficulties in all the phases of swallowing, while some participants had behavioural feeding difficulties. Those who had FSD had the following medical conditions: cardiorespiratory, neurological and gastrointestinal disorders namely acute gastroenteritis and liver disease. Feeding and swallowing difficulties were associated with increased mealtime duration (p=0.005) and supplementary oxygen support (p=0.03). Conclusion: The results confirm that the Feeding and Swallowing Questionnaire shows promising findings as a reliable and valid tool for the identification of FSD in the general hospitalized paediatric population. However, further research in other setting with general paediatric medical wards is required to increase the robustness of the screening tool

Systematic review of transition models for young people with long-term conditions: A report for NHS Diabetes.

Aims For many young people with Type 1 diabetes, transition from paediatric to adult care can result in a marked deterioration in glycaemic control. A systematic review assessed the effectiveness of transition models, or components of models, for managing the transition process in young people with long-term conditions, including Type 1 diabetes. This involved identifying (i) the main barriers and facilitators in implementing a successful transition programme, and (ii) the key issues for young people with long-term conditions and professionals involved in the transition process. Methods The following databases were searched from inception to August 2012: MEDLINE, EMBASE, PsychINFO, CINAHL, ASSIA, Social Services Abstracts, Academic Search Complete, Social Science Citation Index, Cochrane and Campbell Libraries. Selected studies included young people aged 11 to 25 diagnosed with long-term conditions who were in transition from paediatric to adult secondary health care services. Results 16 systematic reviews and 13 primary studies were included from 9992 records retrieved. No single transition model was uniquely effective. The most successful transitions centred around: young person-focused; age and developmentally appropriate content and delivery; self-management education; family participation; paediatric and adult collaboration; designated transition clinics; transition co-ordinator; young person’s portfolio; specific professionals training; multidisciplinary approach; structured process embedded in service delivery. There were no distinctive characteristics of condition-specific Type 1 diabetes services. Conclusion This important and timely review summarises the key factors that need to be considered for the development of transition programmes for young people with long-term conditions, including those with Type 1 diabetes

Association of social factors and health conditions with capacity and performance

OBJECTIVE Determine and measure the association of social factors and health conditions with worse capacity and performance levels. METHODS Dependent variables consisted of performance and capacity; independent variables comprised age, gender, level of education, personal income, and health conditions. Means (95%CI) of performance and capacity were presented according to the independent variables. Generalized linear models, using a mutual adjustment for all variables considered statistically significant (p < 0.05), measured the associations between each exposure and outcomes. Study population included 12,265 individuals. RESULTS Older women with lower education and income levels and with some health condition showed the worst performance and capacity. CONCLUSION Results showed that the capacity and performance levels of the Chilean population changed according to social demographic characteristics and health conditions

Adverse paediatric outcomes of macrolide antibiotics treatment in pregnancy

Background: Over the last 20 years, concerns have been raised about rare but serious adverse outcomes associated with macrolide use during pregnancy. Currently there was no consensus about whether macrolides are considered safe in pregnancy or not. This PhD study aims to examine the association between maternal exposure of macrolide antibiotics during pregnancy and adverse paediatric outcomes where short-term fetal hypoxia could be aetiologically involved. Methods: I first conducted a systematic review and meta-analysis of both random controlled trials and observational studies to investigate the association. I prioritized comparisons of macrolides with alternative antibiotics (mainly penicillins) for comparability of indication and effect. I then performed a large cohort study using a mother-baby linkage derived from the Clinical Practice Research Datalink (CPRD), a UK-representative primary care database. The cohort study assessed the association between macrolide (versus penicillin) prescribing during pregnancy and major malformations, cerebral palsy, epilepsy, attention-deficit/hyperactivity disorder (ADHD), and autism spectrum disorder (ASD) in children. Results: The systematic review and meta-analysis found consistent evidence for an association between macrolide antibiotics use during early pregnancy and an increased risk of miscarriage, inconsistent evidence for cerebral palsy and epilepsy, and insufficient evidence for malformations, stillbirth and neonatal death. The cohort study demonstrated that prescribing macrolides compared with penicillins during the first trimester of pregnancy (4 to 13 Gestational Week) was associated with increased risks of any major malformation and specifically cardiovascular malformations. Macrolide prescribing in any trimester was associated with an increased risk of genital malformations (mostly hypospadias). Erythromycin in the first trimester was found to be associated with an increased risk of any major malformation. Indication bias, unmeasured confounding, live-birth bias and outcome misclassification were unlikely to explain the findings. Conclusions: Considering the widespread use of macrolides during pregnancy, international collaboration is in urgent need to bring together existing datasets for large-scale analyses of high quality trial and observational cohorts that have accurate measurements of macrolides treatment and specific child outcomes. Analyses should pre-specify treatment exposure periods based on the critical period of specific outcomes. The findings of this study warrant cautious use of macrolides in pregnancy and recommendation of alternative antibiotics where feasible

Doctor of Philosophy

dissertationChildren in foster care are a vulnerable population. They are typically in poorer health and experience higher rates of mental health issues and developmental delays. Medically fragile children in foster care are even more vulnerable. They have significant health care needs and require specialized services. Because of these needs, it is critical that medically fragile children in foster care are appropriately identified. The primary purpose of this qualitative, exploratory study was to increase the understanding of medically fragile children served by the Division of Child and Family Services (DCFS) in the State of Utah and propose a definition of medically fragile children for DCFS consideration. There are many definitions used to describe medically fragile children. These definitions vary from broad to restrictive in nature. It is critical to identify criteria to accurately describe a medically fragile child because it will increase the likelihood that these children are appropriately identified. This will result in appropriate services provided to this population and increase the likelihood of their needs being met. Telephone interviews were conducted with 26 participants who had experience working with medically fragile children. Based on the participants' responses, a new definition of a medically fragile child was created. In additional to a medical and/or mental health diagnosis, level of oversight, level of health care needs, level of assistance with daily activities, cognitive delays, developmental delays, and the impact of psychosocial stressors were included in the new definition. Use of this definition may result in children being assessed in a more holistic manner. In addition to incorporating the proposed definition, it is suggested that DCFS provide the following services to improve the care of medically fragile children in foster care: a) appropriate reimbursement to foster parents for caring for medically fragile children, b) qualified respite providers, c) training for foster parents' support system to assist in respite care, d) alternative support services, e) attendance of a DCFS nurse at all child and family team meetings, f) assistance to foster parents in coordination of health care services, and g) necessary medical information to foster parents prior to a child's placement