共查询到20条相似文献，搜索用时 31 毫秒
1.
Chieh-Chung Lin Yen-Hsuan Ni Lung-Huang Lin Beng-Huat Lau Hsun-Chin Chao Hung-Chang Lee 《Pediatrics and neonatology》2018,59(5):507-514
Background
The Identification and Management of Feeding Difficulties (IMFeD?) tool was introduced in 2011 for management of children with feeding difficulties and has been used in various countries around the world. This study aimed to assess its acceptance and effectiveness in clinical practice in Taiwan.Methods
This was a prospective, observational, multicenter study where subjects were followed over 3 months. Outpatients identified as picky eaters, having poor appetite, poor weight gain, or weight loss were enrolled. The acceptance and effectiveness of IMFeD tool were evaluated by caregivers and pediatricians.Results
Among 423 children who completed the study (235 boys, 188 girls; 78.8% aged <5 years, 21.3% aged 6–10 years), the most common feeding difficulties were poor appetite in a fundamentally vigorous child (85.3%) and highly selective intake (70.2%). Mean percentiles for height and weight were 34.6 ± 25.3 and 20.3 ± 21.3 at enrolment, and increased by 5.4 and 5.9 (p < 0.0001) at the last visit, respectively. Most caregivers (86.5%) thought that the IMFeD tool helped them to understand and better identify picky eating behaviors. Pediatricians reported that the IMFeD tool was effective in 99.3% of patients for managing picky eaters in clinical practice.Conclusions
The IMFeD tool was effective in addressing differences in needs according to type of feeding difficulty by providing a systematic approach to manage feeding difficulty in Taiwanese children. It is applicable to the clinical practice and well-accepted by pediatricians and caregivers. 相似文献2.
Sophie Calvert Katie Barwick Melody Par Kah Ni Tan Karin Borges 《European journal of paediatric neurology》2018,22(6):1074-1080
Aim
Despite antiepileptic medication and dietary treatment options available about 45% of children with epilepsy still suffer from uncontrolled seizures. Triheptanoin is an anaplerotic treatment designed to improve energy generation via the Krebs cycle.Method
For the first time, we evaluated the feasibility, tolerability and efficacy of add-on triheptanoin in 12 patients with medically refractory epilepsy (seven males, five females; min–max: 3–18yr, median 13.5 yr).Results
Eight out of a total of 12 children (67%), who tested the treatment, finished the trial and tolerated between 30 and 100 ml of triheptanoin per day for >12 weeks (median 55 ml, 20.5% caloric intake). The most common adverse effects were diarrhea and other gastro-intestinal effects in seven kids. One child experienced leaking and another child had an infected percutaneous endoscopic gastrostomy button. Five children (62.5%), who all had been on the ketogenic diet previously, showed sustained >50% reductions in seizure frequency, including one patient who became seizure free for 30 weeks. Four patients extended their treatment to a total of 201–909 days, until seizure frequency or severity increased.Interpretation
In this small trial, triheptanoin was safe and tolerable in children with epilepsy. As some children showed reductions in seizure numbers and/or severity, larger randomized controlled studies are now needed for further evaluation of safety and efficacy. 相似文献3.
Allana Austin Jean-Pierre Lin Richard Selway Keyoumars Ashkan Tamsin Owen 《European journal of paediatric neurology》2017,21(1):185-192
Background
Dystonia is characterised by involuntary movements and postures. Deep Brain Stimulation (DBS) is effective in reducing dystonic symptoms in primary dystonia in childhood and to lesser extent in secondary dystonia. How families and children decide to choose DBS surgery has never been explored.Aims
To explore parental decision-making for DBS in paediatric secondary dystonia.Methods
Data was gathered using semi-structured interviews with eight parents of children with secondary dystonia who had undergone DBS. Interviews were analysed using Interpretative Phenomenological Analysis.Results
For all parents the decision was viewed as significant, with life altering consequences for the child. These results suggested that parents were motivated by a hope for a better life and parental duty. This was weighed against consideration of risks, what the child had to lose, and uncertainty of DBS outcome. Decisions were also influenced by the perspectives of their child and professionals.Conclusions
The decision to undergo DBS was an ongoing process for parents, who ultimately were struggling in the face of uncertainty whilst trying to do their best as parents for their children. These findings have important clinical implications given the growing referrals for consideration of DBS childhood dystonia, and highlights the importance of further quantitative research to fully establish the efficacy of DBS in secondary dystonia to enhance informed decision-making. 相似文献4.
Context
Dissociative disorders present a huge challenge in clinical settings. In contrast to other dissociative symptoms, dissociative sensibility disorders are rarely focused on.Objective
To identify the clinical characteristics and outcomes of dissociative sensibility disorders in children and adolescents, and to review the use of diagnostic procedures.Data sources
For the review, a literature search used Pubmed, Embase, Web of Science, and PubPsych (to 02/2015) and the reference lists of the studies identified.Study selection
Screening of titles and abstracts; full-text assessment by two reviewers.Data selection
The original case series was identified by using the local data register.Data extraction
Two reviewers independently reviewed the data and, if they agreed on the relevance, extracted the data. In the original case series, data were extracted retrospectively from the records.Results
Sixteen studies and seven case reports were identified, including 931 cases with dissociative disorders. In 210 cases the patient suffered either from a single sensibility disorder or predominantly from sensibility disorders. We identified thirteen further cases in our cohort. In both groups there was female predominance; the mean age of manifestation was early adolescence. The timing of admissions was variable. In approximately 50% of cases a premorbid stressful life event could be identified. Over 75% of cases had a good prognosis with complete resolution.Limitations
Retrospective character of our own data collection, partially missing differentiation between the subgroups of dissociative disorders in the reviewed studies.Conclusions
There is no uniform procedure for diagnostic work-up. The overall short-term prognosis is good. 相似文献5.
Alison L. Miller Ashley N. Gearhardt Lauren Retzloff Julie Sturza Niko Kaciroti Julie C. Lumeng 《Academic pediatrics》2018,18(6):685-691
Objective
To identify whether psychosocial stress exposure during early childhood predicts subsequent increased eating in the absence of hunger (EAH), emotional overeating, food responsiveness, and enjoyment of food.Methods
This was an observational longitudinal study. Among 207 low-income children (54.6% non-Hispanic white, 46.9% girls), early childhood stress exposure was measured by parent report and a stress exposure index calculated, with higher scores indicating more stress exposure. Eating behaviors were measured in early (mean, 4.3; standard deviation, 0.5 years) and middle (mean, 7.9; standard deviation, 0.7 years) childhood. Observed EAH was assessed by measuring kilocalories of palatable food the child consumed after a meal. Parents reported on child eating behaviors on the Child Eating Behavior Questionnaire. Child weight and height were measured and body mass index z score (BMIz) calculated. Multivariable linear regression, adjusting for child sex, race/ethnicity, and BMIz, was used to examine the association of stress exposure with rate of change per year in each child eating behavior.Results
Early childhood stress exposure predicted yearly increases in EAH (β?=?0.14; 95% confidence interval, 0.002, 0.27) and Emotional Overeating (β?=?0.14; 95% confidence interval, 0.008, 0.27). Stress exposure was not associated with Food Responsiveness (trend for decreased Enjoyment of Food; β?=??0.13; 95% confidence interval, 0.002, ?0.26). All child obesogenic eating behaviors increased with age (P?<?.05).Conclusions
Early stress exposure predicted increases in child eating behaviors known to associate with overweight/obesity. Psychosocial stress may confer overweight/obesity risk through eating behavior pathways. Targeting eating behaviors may be an important prevention strategy for children exposed to stress. 相似文献6.
Tamara Dostanic Breda Sustersic Darja Paro-Panjan 《European journal of paediatric neurology》2018,22(4):682-689
Background
The quality of general movements (GMs) has proven to have predictive value for the developmental outcome, but this has not yet been studied in twins.Aims
Our aim was to analyse the quality of GMs and neurological and developmental outcome in relation to the gestational age (GA), mode of conception and other perinatal risk factors in a group of twins.Study design
The documentation of twins referred for follow-up in the period from 1998 to 2016 was studied retrospectively. Data concerning the quality of GMs, perinatal risk factors and developmental outcome were analysed.Subjects
Eighty-nine twin pairs, GA from 24 to 38 weeks (median 35.0; IQR 3), birth weight 670 g–3820 g (median 2323; IQR 645) were included.Outcome measures
Results of neurological, psychological and speech/language development and school outcome were analysed.Results
GMs at term age and at three to four months postterm age did not differ with regard to the mode of conception. Preterm birth was significantly related to GMs at three to four months postterm age. At term age, GMs were significantly related to neurological outcome, while at three to four months postterm age, GMs were related to both the neurological and psychological outcome. Difficulties in speech/language development were diagnosed in almost half of the children, more frequently in boys and children with lower Apgar scores.Conclusion
The study highlights the value of GMs for predicting the developmental outcome in twins and indicates the importance of developmental, especially speech/language, follow-up in twins. 相似文献7.
B.J. van der Knoop K.J. Oostrom I.A. Zonnenberg M.M. van Weissenbruch R.J. Vermeulen J.I.P. de Vries 《European journal of paediatric neurology》2018,22(5):845-853
Background
Maternal trauma complicates pregnancy in approximately 7%. Long-term development of children exposed to maternal trauma is unknown.Aim
To determine neurobehavioural outcome of children (6–18 years) born after maternal trauma in pregnancy compared to a matched control group.Study design
Case-control study performed at a tertiary medical centre.Subjects
All consecutive children born after maternal hospitalization for trauma during pregnancy between 1995 and 2005. Controls were children born at the same hospital and period after an uneventful pregnancy.Outcome measures
Trauma type and severity (Injury Severity Score, ≥9: severe); information from medical files at admission (cases). All mothers filled out two questionnaires about the infant; 1. concerning health, motor development and educational level, 2. concerning behavioural development through the validated Dutch version of the Child Behavior Checklist (CBCL).Results
Questionnaires were returned by 34 cases and 28 controls. The traumas concerned mainly motor vehicle accidents and falls, and 3/34 had severe injuries. No differences in health, motor development, educational level and CBCL was found between the cases and controls, except for more hospitalization in the cases (p = 0.009).Conclusion
Long-term follow-up of a limited population of children 6–18 years after exposure of mainly non-severe trauma before birth is similar to a control population except for unexplained more hospitalization in the cases. 相似文献8.
Mark G. Gabriel Claire E. Wakefield Janine Vetsch Jonathan S. Karpelowsky Anne-Sophie E. Darlington David M. Grant Christina Signorelli 《Journal of pediatric health care》2018,32(2):133-149
Introduction
Surgery in children can be difficult for patients and parents. We aimed to summarize pediatric patients' and parents' psychosocial experiences and needs in surgery.Method
We used the Ovid search engine and screened 877 abstracts across three databases to extract data on pediatric patients' and parents' surgical experiences.Results
Our search yielded 11 eligible studies representing 1,307 children undergoing surgery and their parents. Children's adverse experiences included psychological and behavioral changes before, during, and after surgery (e.g., anxiety, eating disturbances). Parents commonly experienced psychological distress. Children's needs related to medical and health care services, whereas parents had high information needs.Discussion
Children's adverse experiences can negatively affect medical outcomes. Children's experiences are inextricably linked to their parents' and can become negatively affected by their parents' adverse experiences. Patients and parents with previous hospitalizations and surgeries had worse surgical experiences, highlighting further research in the context of chronic illness. 相似文献9.
Alan R. Tait Michael E. Geisser Lamira Ray Raymond J. Hutchinson Terri Voepel-Lewis 《Academic pediatrics》2018,18(4):370-375
Objective
Despite the importance of child assent, there is little consensus on what information should be disclosed and what information is most important to children for decision-making. This study was designed to compare children's/adolescents' priorities for research information with the information parents believe is most important to their children.Methods
Child-parent dyads completed separate and independent surveys regarding information (risks, benefits, etc) that they perceived to be most important to the child to make decisions about participating in a hypothetical randomized controlled trial. Parents responded in the context of what information they believed their child (not themselves) would think important.Results
Fifty-five parent-child dyads completed surveys. Although all information was deemed important, children/adolescents put greater emphasis on privacy and less on knowing the purpose of the study and the benefits compared with what their parents believed was important to their child. Adolescents (13–17 years old) placed greater importance on knowing the procedures, direct benefits, and the voluntary nature of participation compared with younger children (8–12 years old). Parents of older girls in particular placed greater emphasis on their daughter's need to know the purpose of the study, the procedures, benefits, and voluntary nature, compared with parents of boys.Conclusions
Results show that the information priorities of children/adolescents considering participation in a randomized controlled trial differ from that which their parents think is important to them. Pediatric researchers can use this knowledge to ensure that parents do not conflate their own expectations/priorities with those of their child and that children receive the information they need. 相似文献10.
Ruxandra-Iulia Milos Martin Szimacsek Fritz Leutmezer Kevin Rostasy Astrid Blaschek Michael Karenfort Mareike Schimmel Martin Pritsch Karin Storm van&#x;s Gravesande Michael Weber Michaela Schmoeger Rainer Seidl Daniela Prayer Barbara Kornek 《European journal of paediatric neurology》2018,22(6):1087-1094
Background
The diagnosis of multiple sclerosis (MS) both in children and adults is based on clinical and magnetic resonance imaging (MRI) features according to the McDonald criteria. Little is known about differences in the presentation between pre-pubertal children, adolescents, and adult patients at disease onset.Objective
To compare (1) the clinical, cerebrospinal fluid (CSF), and MRI characteristics, and (2) the diagnostic performance of the 2010 McDonald criteria between pre-pubertal, adolescent, and adult patients with a clinically isolated syndrome (CIS).Methods
We performed a retrospective analysis of the initial brain and spinal cord MRI scans from 11 pre-pubertal children, 46 adolescents, and 56 adults with a CIS. Furthermore, clinical, CSF characteristics, and the performance of the 2010 McDonald criteria were compared.Results
The first inter-attack interval tended to increase with age. With respect to MRI presentation, significantly fewer pre-pubertal children presented with juxtacortical and callosal lesions. We found no significant differences in the fulfillment of the 2010 McDonald criteria between the groups.Conclusion
In this retrospective series, subtle differences between children, adolescents, and adults with a CIS were noted. Larger samples are required in order to establish distinct features of the different age groups. 相似文献11.
Barbara K. Giambra Stephen M. Haas Maria T. Britto Ellen A. Lipstein 《Journal of pediatric health care》2018,32(1):21-28
Introduction
The purpose of this study was to explore the communication behaviors demonstrated by parents of children with chronic conditions and provider team members when communicating about the child's care in outpatient clinics using concepts from the Theory of Shared Communication (TSC).Methods
This was a secondary data analysis of 30 previously recorded pediatric clinic visits. Communication among parents and provider team members was analyzed using a researcher-developed coding scheme based on the TSC.Results
Provider team members dominated communication during clinic visits, showing more frequent use of asking, explaining, advocating, and negotiating behaviors than parents. Parents were engaged in communication with frequent asking, explaining, and advocating behaviors.Discussion
Parents of children with chronic conditions and multidisciplinary providers demonstrated the communication behaviors of the TSC in an outpatient clinic setting. Provider dominance of communication in the clinic setting may disempower parents and impair relationships. 相似文献12.
13.
Anne T. Magpuri Jane K. Dixon Ruth McCorkle Angela A. Crowley 《Journal of pediatric health care》2018,32(1):10-20
Introduction
The purposes of this project were (a) to examine criteria derived from evidence-based pediatric acute asthma exacerbation assessment tools, asthma scores, and the acute asthma prediction rule validated and used in the emergency department and (b) to adapt these criteria for pediatric primary care.Method
The three stages of the project included (a) identification of criteria in a literature review, (b) validation of the criteria by an expert panel, and (c) adaptation of the criteria in the design of an assessment tool.Results
The criteria were validated and adapted in the design of The Pediatric Acute Asthma Exacerbation Severity Assessment and Disposition Decision-Making Tool for Pediatric Primary Care.Discussion
The adaptation of criteria derived from the evidence and validated by an expert panel will inform and guide clinicians in assessing severity and support decision making in determining disposition of pediatric patients presenting with an acute asthma exacerbation in primary care. 相似文献14.
Zvi Leibovitz Hanna Mandel Tzipora C. Falik-Zaccai Shani Ben Harouch David Savitzki Karina Krajden-Haratz Liat Gindes Mordechai Tamarkin Dorit Lev William B. Dobyns Tally Lerman-Sagie 《European journal of paediatric neurology》2018,22(3):525-531
Objectives
To elaborate the imaging phenotype associated with a homozygous c.743C > del frameshift mutation in DAG1 leading to complete absence of both α- and β-dystroglycan previously reported in a consanguineous Israeli-Arab family.Methods
We analyzed prenatal and postnatal imaging data of patients from a consanguineous Israeli-Arab kindred harboring the DAG1 mutation.Results
The imaging studies (fetal ultrasound, CT scan and postnatal MRI) demonstrated: flat cortex (abnormally thick with irregular pebbled cortical-white matter border on MRI), hydrocephalus, scattered small periventricular heterotopia and subependymal hemorrhages and calcifications, z-shaped brainstem, and in addition an occipital encephalocele, vermian agenesis, and an elongated and thick tectum (tectocerebellar dysraphia).Conclusions
The novel association of cobblestone malformation with tectocerebellar dysraphia as part of WWS is characteristic of the homozygous c.743C > del frameshift mutation in the DAG1 gene. 相似文献15.
Frances Morrison Jack Fairhurst Charlie Fairhurst 《European journal of paediatric neurology》2018,22(3):451-456
Aim
Evaluation of topical Glyceryl trinitrate as a therapeutic option to improve peripheral circulation in 16 children with severe complex neurodisability, poor capillary return and signs of vascular insufficiency, including discomfort.Methods
If insufficient improvement in capillary return was obtained using conservative measures, a 5 mg GTN patch was placed each day on the front of the tibia of each leg. Children were reviewed clinically for up to 12 months of treatment. Distal limb comfort was measured using a Likert scale, either patient or carer reported. Standardised capillary refill time was assessed at each clinical review.Results
Use of the patches led to improved capillary refill time and parent/patient reported comfort in all children. Healing of skin ulcers in lower limbs after application of the patch was also noted. There was universal parent/patient satisfaction with use of the patch. One child with Aicardi Goutieres syndrome had a skin reaction with prolonged use and minor adverse effects were reported in 4 others but this did not result in discontinuation of treatment.Summary
GTN patches were relatively well tolerated in this group of children. We suggest that use of GTN patches be considered for children with severe neurodisability and poor peripheral circulation causing discomfort. GTN patches may also have a role in healing of persistent skin ulcers for these children. 相似文献16.
Barbora Benova Borivoj Petrak Martin Kyncl Petr Jezdik Alice Maulisova Alena Jahodova Vladimir Komarek Pavel Krsek 《European journal of paediatric neurology》2018,22(4):632-641
Aim
We aimed to identify early predictors of intractable epilepsy, intellectual disability (ID) and autism spectrum disorders (ASD) in the cohort of TSC patients initially diagnosed with cardiac rhabdomyomas (CR).Method
Over the period of twelve years we prospectively obtained clinical, neuropsychological, electrophysiological and neuroimaging data in a group of 22 TSC patients (9 females, 13 males) with the pre/perinatal diagnosis of CR, included to the study at the time of diagnosis. Afterwards, we statistically determined variables associated with ID, ASD and intractable epilepsy.Results
Development of ID was predicted by severe epilepsy (a higher number of anti-epileptic drugs used), a higher number of dysplastic lesions on MRI, and abnormal background activity on EEG (p < 0.05). Predictors of ASD included early developmental delay, abnormal background activity on EEG at the end of follow-up and a higher number of areas with dysplastic features on MRI (p < 0.05). Intractable epilepsy was associated with a higher number of areas with dysplastic features on MRI, ID and with TSC2 genotype.Conclusion
Adverse mental and clinical outcome was associated with intractable epilepsy and the severe anatomical brain involvement; therefore, our centre developed a tailored protocol for early identification of TSC patients at a higher risk of developing intractable epilepsy with its deleterious effect on cognitive outcome. 相似文献17.
Karin Haas-Lude Magdalena Heimgärtner Sarah Winter Victor-Felix Mautner Ingeborg Krägeloh-Mann Karen Lidzba 《European journal of paediatric neurology》2018,22(1):164-169
Aim
Attention deficit and compromised motor skills are both prevalent in Neurofibromatosis type 1 (NF1), but the relationship is unclear. We investigated motor function in children with NF1 and in children with Attention Deficit/Hyperactivity Disorder (ADHD), and explored if, in patients with NF1, attention deficit influences motor performance.Methods
Motor performance was measured using the Movement Assessment Battery for Children (M-ABC) in 71 children (26 with NF1 plus ADHD, 14 with NF1 without ADHD, and 31 with ADHD without NF1) aged 6–12 years.Results
There was a significant effect of group on motor performance. Both NF1 groups scored below children with ADHD without NF1. Attention performance mediated motor performance in children with ADHD without NF1, but not in children with NF1.Conclusions
Motor function is not mediated by attention performance in children with NF1. While in ADHD, attention deficit influences motor performance, motor problems in NF1 seem to be independent from attention deficit. This argues for different pathomechanisms in these two groups of developmental disorders. 相似文献18.
René Kurz Julia Huemer Elvira Muchitsch Martha Feucht 《European journal of paediatric neurology》2018,22(5):803-806
Objective
To evaluate prospectively the effectiveness of cognitive behavioral therapy (CBT) in children with autism spectrum disorder (ASD).Methods
Drug-naïve children who met the DSM-V criteria for a diagnosis of ASD were recruited from a day care center, specialized in long-term treatment of children and adolescents with ASD. Symptom assessment was performed using the Aberrant Behavior Checklist (ABC) before (base-line) and after 12 months (follow-up) of CBT.Results
Nine boys with a mean age of 6 (±2.0) years were included. Compared to baseline, significant improvements of symptoms of irritability (p = 0.012), hyperactivity (p = 0.008) and lethargy (p = 0.008) were observed at follow-up.Conclusion
Results indicate that CBT is an effective therapy for children with ASD. Larger studies are needed to give more details about which symptoms respond best in these patients. 相似文献19.
Elin Hjorth Ulrika Kreicbergs Thomas Sejersen Malin Lövgren 《European journal of paediatric neurology》2018,22(1):128-134
Aim
To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).Materials and methods
This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.Results
More than half of the advice from parents was related to professional–family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.Conclusions
Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals. 相似文献20.
Andreea Nissenkorn Tomer Erlich Dorit E. Zilberman Ifat Sarouk Alexander Krauthammer Noam D. Kitrey Gali Heimer Bruria BenZeev Yoram Mor 《European journal of paediatric neurology》2018,22(6):1118-1123