Here we describe the neurodevelopmental outcomes of very low birth weight (VLBW) infants (birth weight ≤1,500 g) at 3 years of age in the Neonatal Research Network of Japan (NRNJ) database in the past decade and review the methodological issues identified in follow-up studies. The follow-up protocol for children at 3 years of chronological age in the NRNJ consists of physical and comprehensive neurodevelopmental assessments in each participating center. Neurodevelopmental impairment (NDI)-moderate to severe neurological disability-is defined as cerebral palsy (CP) with a Gross Motor Function Classification System score ≥2, visual impairment such as uni- or bilateral blindness, hearing impairment requiring hearing amplification, or cognitive impairment with a developmental quotient (DQ) of Kyoto Scale of Psychological Development score <70 or judgment as delayed by pediatricians. We used death or NDI as an unfavorable outcome in all study subjects and NDI in survivors using number of assessed infants as the denominator. Follow-up data were collected from 49% of survivors in the database. Infants with follow-up data had lower birth weights and were of younger gestational age than those without follow-up data. Mortality rates of 40,728 VLBW infants born between 2003 and 2012 were 8.2% before discharge and 0.7% after discharge. The impairment rates in the assessed infants were 7.1% for CP, 1.8% for blindness, 0.9% for hearing impairment, 15.9% for a DQ <70, and 19.1% for NDI. The mortality or NDI rate in all study subjects, including infants without follow-up data, was 17.4%, while that in the subjects with outcome data was 32.5%. The NRNJ follow-up study results suggested that children born with a VLBW remained at high risk of NDI in early childhood. It is important to establish a network follow-up protocol and complete assessments with fewer dropouts to enable clarification of the outcomes of registered infants.
The current study aimed to identify the characteristics of speech rate and pause in children with spastic cerebral palsy (CP) and their relationships with speech intelligibility. In all, 26 children with CP, 4 with no speech motor involvement and age-appropriate language ability (NSMI-LCT), 6 with no speech motor involvement and impaired language ability (NSMI-LCI), 6 with speech motor involvement and age-appropriate language ability (SMI- LCT), and 10 with speech motor involvement and impaired language ability (SMI-LCI) participated in the study. Speech samples for the speech rate and pause analysis were extracted using a sentence repetition task. Acoustic analysis were made in Praat. First, it was found that regardless of the presence of language impairment, significant group differences between the NSMI and SMI groups were found in speech rate and articulation rate. Second, the SMI groups showed a higher ratio of pause time to sentence production time, more frequent pauses, and longer durations of pauses than the NSMI groups. Lastly, there were significant correlations among speech rate, articulation rate, and intelligibility. These findings suggest that slow speech rate is the main feature in SMI groups, and that both speech rate and articulation rate play important roles in the intelligibility of children with spastic CP.
The Journal of Korea Assosiation for Disability and Oral Health
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v.6
no.2
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pp.116-119
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2010
Trauma to the lips and tongue can occur by accidental self-biting after dental treatment. After local anesthesia, it is likely that the patient may feel painless even in biting the tongue. In case of young children and disabled patients, the dentists should be careful not to bite the tongue. In this report, we present a case of deep lingual laceration due to biting the tongue in the course of dental treatment under general anesthesia. A 33 year-old male was transferred to our hospital to treat tongue laceration. Before 2 hour on arrival, he had received dental care under general anesthesia at a dental hospital for the disabled because of cooperation difficulty and cerebral palsy. During recovery from general anesthesia, he tried to bite his own tongue involuntary. The doctors and nurses tried to prevent the patient from being injured. Despite these efforts, massive bleeding occurred from the injured sites of the tongue. Because we could not communicate with him, we decided to evaluate the extent of the injury and treat the injured sites under general anesthesia. The laceration wound was sutured for nearly 1 hr general anesthesia. During recovery we inserted mouth prop into the oral cavity to prevent further injuries from tongue biting. After full recovery from general anesthesia he didn't try to bite his tongue. After 4 hour admission, he was discharged without other complications.
The Journal of Korean Academy of Sensory Integration
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v.10
no.1
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pp.11-20
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2012
Objective : The purpose of this study is intended to provide useful information about the disability evaluation indicators, the Modified Barthel Index (MBI) as a measurement tool for assessing the ability to perform activities of daily living through the correlation between the Modified Barthel Index (MBI) and the Manual Ability Classification System (MACS), and Gross Motor Function Classification System (GMFCS). Methods : The subject was 82 children with cerebral palsy. The validity was aexamined by calculation of correlation between the Modified Barthel Index (MBI), the Manual Ability Classification System (MACS) and Gross Motor Function Classification System (GMFCS). Results : There were a good significant correlation between the MBI and MACS (r = -.765, p <0.001), the MBI and the GMFCS (r = -.851, p < 0.001) and the MACS and the GMFCS (r = .615, p <0.001). Conclusion : The close correlation between the MBI that is used as the basis of grading cerebral palsy and high reliability and validity of the MACS, GMFCS suggest that disability evaluation indicators, the MBI could be useful for children with disabilities.
This study investigated the relationship between social support and caregiving self-efficacy among 530 mothers of persons with intellectual disabilities in their childhood(age 3-12), adolescence(age 13-18), and adulthood(age 19-35), exploring the moderating effect of the life span affiliation of the children with disabilities. The analysis revealed that greater perception of social support predicted higher level of caregiving self-efficacy for all the mothers. However, the moderating effect was detected indicating that there were differences in the effects of social support on caregiving self-efficacy across groups. Although social support was found to have some positive effects on caregiving self-efficacy for each group of mothers of both adolescents and adults, no effects for a group of mothers of children. These findings suggested that greater emphasis be placed on the expanded provision of social support for families of persons with intellectual disabilities in their developmental stages following the childhood.
Objective : The purpose of this study was to investigate parental perspectives on cognitive rehabilitation using a combination of phenomenological research methodology and word cloud analysis. Methods : Interviews were conducted with five parents of children with developmental disabilities. Word cloud analysis was conducted using Python, and five researchers analyzed the meaning units and themes using phenomenological methods. Words with high frequency were considered as a heuristic tool. Results : A total of 43 meaning units and nine components related to the phenomenon of cognitive rehabilitation were derived, and three themes were finalized. The main themes encompassed the definition of cognitive rehabilitation, challenges associated with cognitive rehabilitation, and factors influencing the selection of a cognitive rehabilitation institute. Cognitive rehabilitation emerged as a treatment focused on improving learning, daily functioning, and cognitive abilities in children with developmental disabilities. The perceived issues with cognitive rehabilitation pertained to treatment methods, therapist expertise, and associated costs. In addition, parents highlighted the importance of therapist expertise, humane personality, and affordability of cost and schedule when choosing a cognitive rehabilitation institute. Conclusion : Parents expressed expectations for substantial improvements in their children's daily functioning through cognitive rehabilitation. However, challenges were identified in clinical practices. Going forward, we expect that cognitive rehabilitation will evolve into a better therapeutic support service addressing the concerns raised by parents.
Journal of The Korean Society of Inherited Metabolic disease
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v.14
no.1
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pp.48-53
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2014
Smith-Lemli-Opitz syndrome (SLO) is a rare, autosomal recessive disease caused by an inborn error in cholesterol synthesis. Patients with this disease suffer from multiple malformations due to reduced activity of 7-dehydrocholesterol reductase (DHCR7), which increases 7-dehydrocholesterol (7DHC) and 8-dehydrocholesterol (8DHC) concentrations and decreases cholesterol concentration in body fluids and tissue. Here, we describe Korean siblings with SLO who were diagnosed recently, and performed a review of literature about Korean cases with SLO to date. Microcephaly and syndactyly of the second and third toes are the most common physical finding in SLOS patients. Other malformations including growth failure, cleft palate or bifid uvula, various heart malformation, genital ambiguity in males are also accompanied. Not all patients showed low levels of serum cholesterol, so DHCR7 mutation analysis can be helpful to confirmative diagnosis. Two mutations on p.R352 locus (p.R352W and p.R352Q) are commonly identified in Korean SLO patients. Although rare in Korea, SLO should be considered in the differential diagnosis of growth failure with intellectual disability, especially in patients with multiple congenital anomalies.
Background: Migraine is one of the leading causes of poor quality of life and disability, and migraine incidences in pediatrics are increasing. Proper medication is important for the preventive and acute treatment of migraine. This study aimed to identify the current status of prescribed medication in pediatric patients with migraine. Methods: We used data from a sample of pediatric patients from the Health Insurance Review and Assessment Service (HIRA-PPS-2018) and analyzed the status of prescription drugs and frequency of visits to medical institutions with migraine diagnoses in pediatric patients. Results: A total of 12,228 pediatric patients diagnosed with migraine during 2018 were analyzed. Among these patients, 7,170 (58.64%) were girls and 9,510 (77.77%) were adolescents. Additionally, 9,157 patients (74.89%) received acute treatment, and 592 patients (4.84%) received combination therapy with analgesics and triptans. Acetaminophen for acute treatment and flunarizine for preventive treatment were the most commonly prescribed. In most children and adolescents, acute treatment drugs were prescribed for less than 14 days. Conclusion: Analgesics, such as acetaminophen or non-steroidal anti-inflammatory drugs, were prescribed frequently for acute treatment in pediatric patients with migraine. The drug prescription duration was within the recommended range, indicating a low risk of overdose. For preventive treatment, clinically studied medication for pediatric patients with migraine was used.
The parents of cerebral palsy children are identified as special individual with responsibilities and roles beyond those of other parents. Physical therapist often direct their attention to the cerebrel palsy child without supporting. teaching or appreciating the parent. As parents are the most influential factor in the child's development and because parents generally have a need to be incorporated in their child's treatment and education. education regarding treatment is essential for the parent. Parents tend to seek information about their child's disability and desire accurate. Straight foreward and complete information about their child. Parent groups are advantageous organizations in that they provide mutual support and emotional and social outlets. While learning to accept a disabled child. parents must deal with additional stressful events which occur when community involvement with the cerebral palsy child begins. The parents are immediately thrust into new roles as they come into contact with medical specialists, physical therapist or other parents of disabled children. These events contribute to a psychological stress. sense of loss and lowing of selfesteem.
The purpose of this study was to find out various problem behaviors of children who were not diagnosed with any disability, but instead, engaged in problem behaviors. This study also intended to review the difficulties of children with problem behaviors, their teachers' difficulties and needs, to suggest support for child care and education teachers. This study conducted semi-structured qualitative interviews with eight child care and education teachers. The interviews were transcribed into text and analyzed by contents. The results of this study are as follows. Problem behaviors of children described by teachers were classified into external and internal types. In addition, children with problem behaviors had experienced difficulties in maintaining relationships with their teachers, peers and parents. Many teachers were not successful to provide appropriate support for preschoolers who demonstrated problem behaviors in classrooms or some teachers provided individualized support. Teachers adapted the behavioral and the psychological approaches to problem behaviors of preschoolers. However, teachers reported difficulties with children with problem behavior and brought up the following issues on teaching children with problem behaviors; managing troubled matters happening in the class, difficulty in controlling teacher's emotions on problem behaviors, the lack of time, the integrated child care time without teacher in charge of child, the interruption in activity progress, the lack of a special way to deal with problem behaviors, and difficulty in cooperation with families through parents-teacher counseling sessions. Teachers counseled with parents who had a child with problem behaviors and revealed that parents reacted to problem behaviors in various ways such as embarrassment, acceptance, ignorance, or avoidance. Most teachers received assistance and support for teaching children with problem behaviors, from families, local communities and in-service training. Lastly, teachers with preschoolers with problem behaviors needed the support of experts on managing behavior problems, assistant teaching personnel, education for parents and teachers, respects for teachers, psychological counseling or play therapy from professional service agencies, diagnosis service at child care and education centers which children attended, and support networking with agencies. Teachers also required the family support of medical diagnosis and psychological counseling and financial support from the government.
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