Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition

Abstract Background & aims Caregivers of children with chronic diseases included in a home enteral nutrition (HEN) programme are at risk of experiencing a feeling of burden, high level of anxiety and psychological distress. The aims of this study were: first, to examine the prevalence of symptoms of anxiety-depression in caregivers of children with neurological diseases requiring HEN by gastrostomy tube (GT); second, to compare the characteristics of caregivers with high or low risk of exhibiting symptoms of anxiety-depression; and third, to investigate possible associations to child disease severity and nutrition support mode. Methods A cross-sectional observational study was performed in 58 caregivers of children (31 boys, aged 0.3-18 years) with neurological diseases and GT feeding. The characteristics of caregivers with high or low risk of presenting symptoms of anxiety-depression were compared regarding the following variables: socio-demographic characteristics, the primary caregiver's intrapsychic factors, anthropometric parameters of the child, length of HEN, type of nutrients delivered by GT and infusion regime. Results All primary caregivers were mothers. Fifty-three per cent of them showed high risk of exhibiting symptoms of anxiety-depression. Mothers with high or low risk of presenting symptoms of anxiety-depression were comparable in age and family socio-economic status. They were also similar in terms of age, anthropometric conditions and length of HEN in their children. No differences were found between the two groups of mothers according to the level of the child's motor function impairment, type of nutrients delivered by GT and infusion regime. Higher levels of psychological distress and perception of burden overload were found in mothers with high risk of exhibiting symptoms of anxiety-depression. Conclusions This study found a high prevalence of symptoms of anxiety-depression, perception of burden overload and psychological distress in caregivers of children with HEN. Thus, greater practical and emotional support is required for these families

Psychometric properties of the structured Satisfaction Questionnaire with Gastrostomy Feeding (SAGA-8) for caregivers of children with gastrostomy tube nutritional support

BACKGROUND: To analyse the psychometric properties of the structured Satisfaction Questionnaire with Gastrostomy Feeding (SAGA-8) in parents/caregivers of children with home enteral nutrition (HEN) by gastrostomy tube (GT). METHODS: Eighty-six caregivers (mothers) of paediatric patients with HEN by GT were recruited. Patients suffered from neurological disease (61.6%) and other chronic diseases. The SAGA-8 scale, a structured questionnaire to explore satisfaction with HEN by GT, and the Caregiver Burden Inventory (Zarit) were completed. The discriminating power of each of the SAGA-8 items, internal consistency and external validity were evaluated. An exploratory factor analysis and Kaiser-Meyer-Olkin (KMO) was performed as well. RESULTS: Eighty-four percent of the families expressed high satisfaction with GT feeding. All eight items of SAGA-8 gave additional information. The exploratory factor analysis revealed that a significant part of the items' variability could be explained by two independent factors: Factor 1 (direct benefit), which compiled the variables related to the perception of children's overall improvement by GT feeding; Factor 2 (indirect benefit), which grouped the variables related to a decrease in respiratory infections, feeding time and institutional support. Results from KMO (0.628) indicated the high adequacy of the items assessed in the factorial analysis. Moreover, the questionnaire presented high internal consistency (0.76), and the external validation analysis confirmed the correlation between SAGA-8 and Zarit, thereby emphasising the approptiate use of the SAGA-8 to detect carers' satisfaction. CONCLUSIONS: The SAGA-8 questionnaire has a high discriminatory power to assess the degree of satisfaction experienced by parents/caregivers of children with HEN by GT and, subsequently, the patients' wellbeing

Satisfaction with gastrostomy feeding in caregivers of children with home enteral nutrition: application of the SAGA-8 questionnaire and analysis of involved factors.

Aims: To assess the degree of satisfaction of caregivers of children with gastrostomy tube (GT) feeding through the structured questionnaire SAGA-8. Secondly, to evaluate if the parental satisfaction degree was related to several independent variables. Methods: A cross-sectional observational study was performed in 92 caregivers of children with GT feeding and chronic diseases. The following data was obtained: caregiver satisfaction with GT feeding (SAGA-8), age at GT placement, anthropometric data, length and mode of nutritional support, family demographic characteristics and caregiver psychological status. Results: All primary caregivers were mothers. High satisfaction with GT feeding was expressed by 82.6% of families. The simplicity of the system was emphasized by 87%, and 85.9% were very satisfied with the support received from the hospital staff. 73.9% of mothers acknowledged their child"s nutritional status had improved and 89.1% rated the enhancement family"s overall situation. Moreover, 75% of mothers reduced feeding-time, and 68.5% reported less respiratory infections. Finally, 71.7% of mothers recognized that they would have implemented this technique earlier. Caregiver satisfaction was positively correlated with age at GT placement and length of treatment, and both variables explained the 19.4% of the satisfaction variance. No correlation with anthropometric data, nutrition support mode, family demographic characteristics or caregiver psychological status was observed. Conclusions: The SAGA-8 questionnaire is a simple,specific, straight-forward tool to evaluate parental/caregiver degree of satisfaction with GT feeding and facilitates effective monitoring of the intervention. Lengths of HEN and precocious age at GT placement are responsible for most of parental satisfaction

Assessment of nutritional status and bone health in neurologically impaired children: a challenge in pediatric clinical practice

NTRODUCTION: neurologically impaired children frequently experience nutritional disorders and bone health complications. Our aim was firstly to analyze a method to interpret bone mineral density (BMD) accurately in neurologically impaired children. Secondly, to determine its relationship with the nutritional status and micronutrient levels in order to identify which factors are associated with low BMD. METHODS: a observational multicenter study was conducted in children with moderate-to-severe neurological impairment. Data collected included: medical records, anthropometric measures, hematologic and biochemical evaluation. BMD was measured with Dual-energy X-ray absorptiometry and z-scores were calculated adjusting for sex and chronological age. Secondly, BMD z-scores were calculated applying height age (age at which the child's height would be in 2nd percentile) instead of chronological age. RESULTS: fifty-two children were included (aged 4-16 years). Seventeen patients (32.7%) received feeding by gastrostomy tube. Height and BMI z-score were below 2SD in 64% and 31% of patients respectively, with normal mid upper arm circumference and skinfold thickness measurements. Low vitamin-D levels were found in 42% of cases. 50% of patients evidenced low BMD when calculated for chronological age, whereas only 34.5% showed BMD z-score <-2 when calculated for height age. No correlation was observed between BMD and vitamin-D levels, weight and height z-scores or age when BMD was calculated applying height age. CONCLUSIONS: the prevalence of low BMD is high in neurologically impaired children, and it is probably multifactorial. In these children, we suggest adjusting BMD for height age, in order not to over diagnose low BMD

Critical analysis of three newborn hearing screening protocols

TEMA: conhecer a validade dos procedimentos para triagem auditiva neonatal (TAN) é fundamental, visto que a meta desses programas é identificar todos os recém-nascidos com deficiência auditiva, com um custo aceitável. OBJETIVO: estimar a especificidade e taxa de falso-positivo de protocolos de TAN, realizados com emissões otoacústicas evocadas transientes (EOET) e potenciais evocados auditivos de tronco encefálico automático (PEATEa). MÉTODOS: 200 recém-nascidos foram submetidos à TAN entre março e julho de 2006. Foram analisados três protocolos: protocolo 1, TAN realizada em duas etapas com EOET; protocolo 2, TAN realizada em duas etapas com PEATEa; e protocolo 3, TAN realizada em uma etapa com dois procedimentos - teste com EOET seguido de reteste com PEATEa para os recém-nascidos que não passaram nas EOET. RESULTADOS: apesar de não ter havido diferença estatisticamente significante quando comparadas as taxas de encaminhamento para diagnóstico audiológico obtidos nos protocolos com EOAET e PEATEa, o protocolo com EOET encaminhou quatro vezes mais recém-nascidos. O protocolo 3 apresentou a maior taxa de encaminhamento, com diferença estatisticamente significante ao ser comparado com os protocolos 1 e 2. Conclusões: a taxa de falso-positivo e conseqüentemente a especificidade foram melhores no protocolo com PEATEa, seguido dos protocolos com EOET e com EOET e PEATEa.BACKGROUND: having knowledge about the validity of procedures for newborn hearing screening (NHS) is fundamental, once the purpose of these programs is to identify all newborns with hearing loss at an acceptable cost. AIM: to estimate the specificity and the false-positive rate of NHS protocols using transient evoked otoacoustic emissions (TEOAE) and automated auditory brainstem response (AABR). METHOD: participants were 200 newborns who were submitted to a hearing screening test between March and July 2006. Three protocols were analyzed: protocol 1, NHS was carried out in two steps using TEOAE; protocol 2, NHS was carried out in two steps using AABR; and protocol 3, NHS was carried out in one step, using the two procedures - testing with TEOAE followed by a retest with AABR for all the newborns who did not pass the TEOAE testing. RESULTS: although there was no statistically significant difference when comparing the referral rates to audiological diagnosis obtained in protocols using TEOAE and AABR, the protocol using TEOAE referred four times more newborns. Protocol 3 presented the highest referral rate, with a statistically significant difference when compared to protocols 1 and 2. CONCLUSIONS: the false-positive rate and consequently specificity were better for the protocol using AABR, followed respectively by the protocol using TEOAE and using both TEOAE and AABR

Reactivation of ancestral strains of HIV-1 in the gp120 V3 env region in patients failing antiretroviral therapy and subjected to structured treatment interruption

We analyzed gp120V3 HIV-1 env region genetic diversity of 27 patients failing antiretrovirals and subjected to 12-week structured treatment interruption (STI). Based on heteroduplex mobility assays, eight patients presented low pre- and post-STI genetic diversity (G1); five presented high pre-STI but low post-STI diversity (G2); five presented low pre-STI and high post-STI diversity (G3); and nine, high pre- and post-STI diversity (G4). One patient from G1, two from G2 and two from G3 were subjected to proviral DNA end-point PCR and sequencing. in three patients, the dramatic disturbance caused by STI resulted in ancestral viral progeny activation, which repopulated the cell reservoir. in two patients presenting highly homogeneous sequences and low immune selective pressure (dN/dS ratio < 1), this phenomenon was not observed. the mechanisms involved in viral evolution, in which antiretroviral therapy also applies selective pressure, sometimes affects coreceptor usage of circulating viruses, leading to the suppression of x4 strains. (c) 2006 Published by Elsevier Inc.Universidade Federal de São Paulo, Escola Paulista Med, Lab Retrovirol, BR-04039032 São Paulo, BrazilFundacao Pro Sangue, BR-05403000 São Paulo, BrazilUniversidade Federal de São Paulo, Escola Paulista Med, Lab Retrovirol, BR-04039032 São Paulo, BrazilWeb of Scienc

Impact of landscape configuration and composition on pollinator communities across different European biogeographic regions

IntroductionHeterogeneity in composition and spatial configuration of landscape elements support diversity and abundance of flower-visiting insects, but this is likely dependent on taxonomic group, spatial scale, weather and climatic conditions, and is particularly impacted by agricultural intensification. Here, we analyzed the impacts of both aspects of landscape heterogeneity and the role of climatic and weather conditions on pollinating insect communities in two economically important mass-flowering crops across Europe. MethodsUsing a standardized approach, we collected data on the abundance of five insect groups (honey bees, bumble bees, other bees, hover flies and butterflies) in eight oilseed rape and eight apple orchard sites (in crops and adjacent crop margins), across eight European countries (128 sites in total) encompassing four biogeographic regions, and quantified habitat heterogeneity by calculating relevant landscape metrics for composition (proportion and diversity of land-use types) and configuration (the aggregation and isolation of land-use patches). ResultsWe found that flower-visiting insects responded to landscape and climate parameters in taxon- and crop-specific ways. For example, landscape diversity was positively correlated with honey bee and solitary bee abundance in oilseed rape fields, and hover fly abundance in apple orchards. In apple sites, the total abundance of all pollinators, and particularly bumble bees and solitary bees, decreased with an increasing proportion of orchards in the surrounding landscape. In oilseed rape sites, less-intensively managed habitats (i.e., woodland, grassland, meadows, and hedgerows) positively influenced all pollinators, particularly bumble bees and butterflies. Additionally, our data showed that daily and annual temperature, as well as annual precipitation and precipitation seasonality, affects the abundance of flower-visiting insects, although, again, these impacts appeared to be taxon- or crop-specific. DiscussionThus, in the context of global change, our findings emphasize the importance of understanding the role of taxon-specific responses to both changes in land use and climate, to ensure continued delivery of pollination services to pollinator-dependent crops

The ocean sampling day consortium

Ocean Sampling Day was initiated by the EU-funded Micro B3 (Marine Microbial Biodiversity, Bioinformatics, Biotechnology) project to obtain a snapshot of the marine microbial biodiversity and function of the world’s oceans. It is a simultaneous global mega-sequencing campaign aiming to generate the largest standardized microbial data set in a single day. This will be achievable only through the coordinated efforts of an Ocean Sampling Day Consortium, supportive partnerships and networks between sites. This commentary outlines the establishment, function and aims of the Consortium and describes our vision for a sustainable study of marine microbial communities and their embedded functional traits

Nutrición parenteral domiciliaria en España, 2019: informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA

RESUMEN Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (www.nadyasenpe.com) del año 2019. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE desde el 1 de enero al 31 de diciembre de 2019. Resultados: se registraron 283 pacientes (51,9 %, mujeres), 31 niños y 252 adultos procedentes de 47 hospitales españoles, lo que representa una tasa de prevalencia de 6,01 pacientes/millón de habitantes/año 2019. El diagnóstico más frecuente en los adultos fue “oncológico paliativo” y “otros” (21,0 %). En los niños fue la enfermedad de Hirschsprung junto a la enterocolitis necrotizante, las alteraciones de la motilidad intestinal y la pseudoobstrucción intestinal crónica, con 4 casos cada uno (12,9 %). El primer motivo de indicación fue el síndrome del intestino corto tanto en los niños (51,6 %) como en los adultos (37,3 %). El tipo de catéter más utilizado fue el tunelizado tanto en los niños (75,9 %) como en los adultos (40,8 %). Finalizaron 68 episodios, todos en adultos: la causa más frecuente fue el fallecimiento (54,4 %). Pasaron a la vía oral el 38,2 %. Conclusiones: el número de centros y profesionales colaboradores con el registro NADYA va incrementándose. Se mantienen estables las principales indicaciones y los motivos de finalización de la NPD

The Ocean Sampling Day Consortium

Ocean Sampling Day was initiated by the EU-funded Micro B3 (Marine Microbial Biodiversity, Bioinformatics, Biotechnology) project to obtain a snapshot of the marine microbial biodiversity and function of the world’s oceans. It is a simultaneous global mega-sequencing campaign aiming to generate the largest standardized microbial data set in a single day. This will be achievable only through the coordinated efforts of an Ocean Sampling Day Consortium, supportive partnerships and networks between sites. This commentary outlines the establishment, function and aims of the Consortium and describes our vision for a sustainable study of marine microbial communities and their embedded functional traits