Evaluation of UK paediatric nephrology teams' understanding, experience and perceptions of oral health outcomes and accessibility to dental care: a mixed-methods study.

BACKGROUND: Oral health conditions are common in children and young people (CYP) with kidney disorders. There is currently limited literature on how confident paediatric nephrology teams feel to identify and manage oral health concerns for their patients. METHOD: An exploratory mixed-method survey was distributed across all 13 UK specialist paediatric nephrology centres with responses received from consultants, registrars, specialist nurses and special interest (SPIN) paediatricians. RESULTS: Responses received from 109 multidisciplinary team members of 13/13 (100%) UK tertiary units. Ninety-two percent (n = 100) of respondents reported they had never received any training in oral health and 87% (n = 95) felt that further training would be beneficial to optimise care for patients and improve communication between medical and dental teams. Most respondents reported that they did not regularly examine, or enquire about, their patients' oral health. Only 16% (n = 17) reported that all their paediatric kidney transplant recipients underwent routine dental assessment prior to transplant listing. Severe adverse oral health outcomes were rarely reported and only 11% (n = 12) of respondents recalled having a patient who had a kidney transplant delayed or refused due to concerns about oral infection. Seventy-eight percent (n = 85) felt that joint working with a dental team would benefit patients at their unit; however, 17% (n = 18) felt that current infrastructure does not currently support effective joint working. CONCLUSIONS: Across the UK, paediatric kidney health professionals report lack of confidence and training in oral health. Upskilling subspecialty teams and creating dental referral pathways are recommended to maximise oral health outcomes for CYP with kidney diseases.

The prevalence of familial vesicoureteric reflux in infants with normal antenatal scans.

AIM: To determine the prevalence of familial vesicoureteric reflux (VUR) by studying the outcomes of screening in a contemporary cohort of newborns with normal antenatal kidney scans. METHODS: A review of screening outcomes in newborns with a first degree relative with VUR, normal antenatal scans and no prior urine infections between 2014-2019 at three maternity units in the North East of England was conducted. Imaging consisted of micturating cystourethrogram (MCUG) in all and renal tract ultrasound scan (RUS) routinely in two units and by clinician preference in one unit. RESULTS: At a median age of 59 days, 265 infants underwent MCUG. High-grade VUR (Grades 3-5) was detected in 13 (4.9%) and low-grade VUR (Grades 1-2) in 24 (9.1%). In the 152 infants who had a RUS, abnormalities were detected in 21 (13.8%). An abnormal postnatal RUS has a low positive predictive value (14.3%) for high-grade VUR, but a normal RUS has a high negative predictive value (95.4%). CONCLUSION: Compared to historical cohorts from two decades ago, the yield from familial VUR screening is low and unjustifiable in the setting of normal antenatal anomaly scans.

Problem solving in clinical practice: the sick infant with low sodium and high potassium.

Many paediatricians will be faced with a sick infant who on investigation is found to have hyponatraemia and hyperkalaemia at some time in their career. The focus of initial management includes the treatment of potentially life-threatening hyperkalaemia with concurrent investigation aiming to elucidate whether the underlying cause reflects a primarily renal or endocrine pathology. We describe the presentation of two infants who each presented with one of the more common underlying diagnoses that led to this biochemical disturbance and discuss the approach to immediate treatment, diagnostic work-up and longer term management.

School education to increase organ donation and awareness of issues in transplantation in the UK.

BACKGROUND: Over 6000 people are on the United Kingdom organ transplant waiting list, and approximately three people die each day due to a lack of donors. Social deprivation status has been shown to affect registration. The aim of this study was to evaluate the effectiveness of school level education at increasing awareness of the issues surrounding organ donation and organ donor registration, and the effect of socioeconomic deprivation and age has on these outcomes. METHODS: A 15-minute presentation about organ donation and the issues in transplantation was given to secondary school students from the United Kingdom. An optional questionnaire was then distributed. RESULTS: 1155 paper questionnaires were completed from nine schools. The average age was 15.5 (SD = 0.5) years. Before the presentation, 10% of students were on the ODR. Following the presentation, the number of students who were on the ODR or planned to join significantly increased to 56%, independent of age (P < 0.0001). Similarly, there was a significant increase in Likert scores for awareness of the issues in transplantation, independent of age (P < 0.0001). CONCLUSIONS: This early educational presentation significantly increased awareness of the issues in transplantation and planned organ donor registration, independent of age and deprivation.

Parenting a child with autism in India: narratives before and after a parent-child intervention program.

In many low and middle income countries where autism-related resources are scarce, interventions must rely on family and parents. A 3-month Parent-Child Training Program (PCTP) at Action For Autism, New Delhi, India is aimed at empowering and educating parents, encouraging acceptance of their child, and decreasing parent stress. Forty couples were asked to describe their child with autism using the Five Minute Speech Sample (FMSS), an open-ended narrative method, before and after the program. Parents described a wide range of child behaviors, primarily social and cognitive skills. While all families were of a relatively affluent strata compared to the general Indian population, there were nonetheless significant differences in parents' narratives based on their income levels. Coming into the program, parents with relatively less income focused on their child's immediate and material needs, while higher income parents discussed their parental roles and vision for society. After the PCTP, parents were more likely to reflect on their child beyond comparisons to 'normality,' and beyond the here-and-now. Mothers were more likely than fathers to reflect on themselves and their relationships with their child. Understanding parents' experiences and narratives is essential for the evaluation of interventions such as the PCTP, as Indian parents are incorporated into a growing global network of 'parents of children with autism.'

Autonomic and Electrophysiological Evidence for Reduced Auditory Habituation in Autism.

It is estimated that nearly 90% of children on the autism spectrum exhibit sensory atypicalities. What aspects of sensory processing are affected in autism? Although sensory processing can be studied along multiple dimensions, two of the most basic ones involve examining instantaneous sensory responses and how the responses change over time. These correspond to the dimensions of 'sensitivity' and 'habituation'. Results thus far have indicated that autistic individuals do not differ systematically from controls in sensory acuity/sensitivity. However, data from studies of habituation have been equivocal. We have studied habituation in autism using two measures: galvanic skin response (GSR) and magneto-encephalography (MEG). We report data from two independent studies. The first study, was conducted with 13 autistic and 13 age-matched neurotypical young adults and used GSR to assess response to an extended metronomic sequence. The second study involved 24 participants (12 with an ASD diagnosis), different from those in study 1, spanning the pre-adolescent to young adult age range, and used MEG. Both studies reveal consistent patterns of reduced habituation in autistic participants. These results suggest that autism, through mechanisms that are yet to be elucidated, compromises a fundamental aspect of sensory processing, at least in the auditory domain. We discuss the implications for understanding sensory hypersensitivities, a hallmark phenotypic feature of autism, recently proposed theoretical accounts, and potential relevance for early detection of risk for autism.

Salt processing in larval Drosophila: choice, feeding, and learning shift from appetitive to aversive in a concentration-dependent way.

Sodium and chloride need to be ingested and cannot be stored. Therefore, choice of habitat and diet as related to NaCl needs to be tightly regulated. We thus expect that the behavioral effects of salt are organized according to its concentration. Here, we comparatively "fingerprint" the reflex releasing (in choice and feeding experiments) versus the reinforcing effects of sodium chloride ("salt") in terms of their concentration dependencies, using larval Drosophila. Qualitatively, we find that the behavioral effects of salt in all 3 assays are similar: choice, feeding, and reinforcing effect all change from appetitive to aversive as concentration is increased. Quantitatively, however, the appetitive effects for choice and feeding share their optimum at around 0.02 M, whereas the dose-response curve for the reinforcing effect is shifted by more than one order of magnitude toward higher concentrations. Interestingly, a similar shift between these 2 kinds of behavioral effect is also found for sugars (Schipanski et al. 2008). Thus, for salt and for sugar, the sensory-to-motor system is more sensitive regarding immediate, reflexive behavior than regarding reinforcement. We speculate that this may partially be due to a dissociation of the sensory pathways signaling toward either reflexive behavior or internal reinforcement.

An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework.

This is the third in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The present study aimed to describe functioning in ASD (as operationalized by the ICF) derived from the perspectives of diagnosed individuals, family members, and professionals. A qualitative study using focus groups and semi-structured interviews were conducted with 19 stakeholder groups (N = 90) from Canada, India, Saudi Arabia, South Africa, and Sweden. Meaningful concepts from the focus groups and individual interviews were linked to ICF categories using a deductive qualitative approach with standardized linking procedures. The deductive qualitative content analysis yielded meaningful functioning concepts that were linked to 110 ICF categories across all four ICF components. Broad variation of environmental factors and activities and participation categories were identified in this study, while body functions consisted mainly of mental functions. Body structures were sparsely mentioned by the participants. Positive aspects of ASD included honesty, attention to detail, and memory. The experiences provided by international stakeholders support the need to understand individuals with ASD in a broader perspective, extending beyond diagnostic criteria into many areas of functioning and environmental domains. This study is part of a larger systematic effort that will provide the basis to define ICF Core Sets for ASD, from which assessment tools can be generated for use in clinical practice, research, and health care policy making. Autism Res 2018, 11: 463-475. © 2017 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. LAY SUMMARY: The study findings support the need to understand the living experiences of individuals with Autism Spectrum Disorder (ASD) from a broader perspective, taking into account many areas of an individual's functioning and environment. The ICF can serve as foundation for exploring these living experiences more extensively by offering tools that enable wide variety of individual difficulties and strengths to be captured along with important environmental influences. As such, these tools can facilitate interventions that meet the needs and goals of the individual.

Modeling the sorption kinetics of divalent metal ions onto mineral adsorbent using integral method.

A mathematical model has been developed that could predict kinetic parameters for the adsorption of divalent cations (lead, copper and zinc) onto low-grade rock phosphate using experimental data. The experiments were conducted with the initial concentrations of metal ions ranging from 10 to 100 mg/L. The mathematical model is based on application of Freundlich isotherm to mass transfer across the film surrounding the adsorbent. A code in C programming is used to numerically integrate the model equation, and to obtain the best simulated values of Freundlich constants K, N, order of reaction n, and film transfer coefficient, alpha. It is observed that the adsorption of metal ions on rock phosphate is more sensitive to N,n, and alpha in comparison to K, and lead is adsorbed more favorably than copper and zinc.

Novel selective biocatalytic deacylation studies on key precursors for bicyclonucleosides.

Immobilized Candida antarctica lipase and Thermomyces lanuginosus lipase catalyze the deacylation of precursors of LNA analogs, 4'-C-acyloxymethyl-2',3',5'-tri-O-acyl-beta-L-threo-pentofuranosylthymine and 4-C-acyloxymethyl-3,5-di-O-acyl-1,2-O-(1-methylethylidene)-beta-L-threo-pentofuranose, respectively in a highly selective and efficient manner.

Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version.

OBJECTIVE: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). METHODS: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. RESULTS: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). CONCLUSION: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD--both with respect to disability and exceptionality--and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD.

Heterocyclic compounds as inflammation inhibitors.

Clinical use of non-steroidal anti-inflammatory drugs (NSAIDs) is associated with significant toxicity particularly in the gastrointestinal tract and kidney. Various approaches such as formulation co-administration (of agents to protect the stomach), chemical manipulation and synthesis of new safer anti-inflammatory drugs reported in the literature to overcome the toxicity of NSAIDs have been summarized. As far as synthesis of new more effective and safer anti-inflammatory drugs is concerned, we have reported recent findings in the area of synthesis of heterocyclic compounds such as pyrimidines, imidazole, benzimidazole, thiazole, thiazolidine, acridine, thiourea, alkanoic acid derivatives and other related heterocyclic compounds and their role as inflammation inhibitors.

Adults with autism in India: a mixed-method approach to make meaning of daily routines.

Although individuals with Autism Spectrum Disorder (ASD) have been diagnosed in India for over fifty years, virtually nothing is known about the social circumstances of adults, their daily lives, and their families. Where are adults with autism? How do they spend their time? Who are they with, and what are they doing all day? A mixed-method approach was used to obtain information on daily routines of 54 adults with ASD living in New Delhi, India, and about parent levels of stress associated with these routines during a study collected from January through June, 2013. Whether or not they attended a structured setting during the day (59% did so), adults engaged in some 20 activities both inside and outside their home. Contrary to our expectations, most adults were not "hidden" and were out in public at least on occasion. Higher functioning adults were more likely to attend a structured setting, but parents described challenging behaviors, both adult and parent preference, and lack of options as reasons that adults stayed home. The amount of time adults spent outside their home was not associated with parent reported stress, but stress was significantly higher for mothers who were employed. Most families described adaptation to caring for their adult children. A partnership with an Indian nongovernmental organization provided mechanisms to amplify our research findings, making them meaningful to our participants and others.

Translation and usability of autism screening and diagnostic tools for autism spectrum conditions in India.

There is a critical need for screening and diagnostic tools (SDT) for autism spectrum conditions (ASC) in regional languages in South Asia. To address this, we translated four widely used SDT (Social Communication Disorder Checklist, Autism Spectrum Quotient, Social Communication Questionnaire, and Autism Diagnostic Observation Schedule) into Bengali and Hindi, two main regional languages (~ 360 million speakers), and tested their usability in children with and without ASC. We found a significant difference in scores between children with ASC (n = 45 in Bengali, n = 40 in Hindi) and typically developing children (n = 43 in Bengali, n = 42 in Hindi) on all SDTs. These results demonstrate that these SDTs are usable in South Asia, and constitute an important resource for epidemiology research and clinical diagnosis in the region.

Classification of functioning and impairment: the development of ICF core sets for autism spectrum disorder.

Given the variability seen in Autism Spectrum Disorder (ASD), accurate quantification of functioning is vital to studying outcome and quality of life in affected individuals. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive, universally accepted framework for the description of health-related functioning. ICF Core Sets are shortlists of ICF categories that are selected to capture those aspects of functioning that are most relevant when describing a person with a specific condition. In this paper, the authors preview the process for developing ICF Core Sets for ASD, a collaboration with the World Health Organization and the ICF Research Branch. The ICF Children and Youth version (ICF-CY) was derived from the ICF and designed to capture the specific situation of the developing child. As ASD affects individuals throughout the life span, and the ICF-CY includes all ICF categories, the ICF-CY will be used in this project ("ICF(-CY)" from now on). The ICF(-CY) categories to be included in the ICF Core Sets for ASD will be determined at an ICF Core Set Consensus Conference, where evidence from four preparatory studies (a systematic review, an expert survey, a patient and caregiver qualitative study, and a clinical cross-sectional study) will be integrated. Comprehensive and Brief ICF Core Sets for ASD will be developed with the goal of providing useful standards for research and clinical practice and generating a common language for functioning and impairment in ASD in different areas of life and across the life span.

Ethical considerations in conducting research on autism spectrum disorders in low and middle income countries.

Autism spectrum disorder (ASD) is being identified in an ever-increasing number of countries, including many that are low or middle income (LMIC). Research conducted in these countries requires awareness of unique ethical issues. Drawing on the experience of two organizations that have been involved in conducting and collaborating in ASD research in India, we describe specific considerations in conducting epidemiological, genetic and treatment studies as well as general principles from the field of multinational clinical research as they apply to the conduct of ASD research. We argue that greater attention to ethical concerns will result in quality studies conducted in LMICs that are also of greatest relevance for families and children with ASD.

Prenatal, perinatal and neonatal risk factors of Autism Spectrum Disorder: a comprehensive epidemiological assessment from India.

Incidence of Autism Spectrum Disorder (ASD) is increasing across the globe and no data is available from India regarding the risk factors of ASD. In this regard a questionnaire based epidemiological assessment was carried out on prenatal, perinatal and neonatal risk factors of ASD across 8 cities in India. A retrospective cohort of 942 children was enrolled for the study. 471 children with ASD, under age of 10, were analyzed for pre-, peri-, and neonatal factors and were compared with the observations from equal number of controls. The quality control of the questionnaire and data collection was done thoroughly and the observations were computed statistically. A total of 25 factors were evaluated by unadjusted and adjusted analysis in this study. Among the prenatal factors considered, advanced maternal age, fetal distress and gestational respiratory infections were found to be associated with ASD and had an odds ratio of 1.8. Evaluation of perinatal and neonatal risk factors showed labor complications, pre-term birth, neonatal jaundice, delayed birth cry and birth asphyxia to be associated with ASD with an odds ratio greater than 1.5. This important study, first of its kind in Indian population gives a firsthand account of the relation of pre-, peri- and neonatal risk factors on ASD from an ethnically and socially diverse country like India, the impact of which was unknown earlier. This advocates additional focused investigations on physiological and genetic changes contributed by these risk factor inducing environments.

Maternal hormonal interventions as a risk factor for Autism Spectrum Disorder: an epidemiological assessment from India.

Globalization and women empowerment have led to stressful life among Indian women. This stress impairs women's hormonal makeup and menstrual cycle, leading to infertility. National Family Health Survey-3 (NFHS-3) reports a decline in fertility status in India, indicating a rise in various infertility treatments involving hormonal interventions. No studies are available from India on the risk association link between maternal hormonal treatments and ASD. Hence, this study explores the association of maternal hormonal interventions with risk for ASD. Parents of 942 children (471 ASD and 471 controls) across 9 cities in India participated in the questionnaire-based study. The questionnaire was pilot tested and validated for its content and reliability as a psychometric instrument. Data collection was done at 70 centres through direct interaction with parents and with the help of trained staff. Statistical analysis of data was carried out using SAS 9.1.3. Out of the 471 ASD cases analysed, 58 mothers had undergone hormonal interventions (12.3 percent) while there were only 22 mothers among controls who underwent hormonal interventions (4.6 percent). According to logistic regression analysis maternal hormonal intervention (OR=2.24) was a significant risk factor for ASD.