Febrile seizures: perceptions and knowledge of parents of affected and unaffected children.
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ABSTRACT:
SUBMITTER: Rice SA
PROVIDER: S-EPMC8648401 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Little is known about disclosure of diagnosis to males with Klinefelter syndrome (KS) diagnosed before birth or during childhood, especially in Asian context. Insufficient preparation for disclosure communication could lead to the child's depression, anxiety, or disrupted self-esteem. This is an interventional and qualitative interview study with a brief self-reported survey. The study consists of three phases. In phase I, adults with KS were asked about their experiences and viewpoints toward KS disclosure and diagnosis through individual interviews. In phase II, unaffected adolescent males were given information about KS and then asked to give hypothetical answers to a questionnaire followed by a group interview, as if they had KS. In phase III, parents of children with KS were asked to complete a questionnaire followed by a group interview which included a discussion about their disclosure plans and their concerns. The parents were provided information obtained from adults with KS and unaffected adolescent males, and were then interviewed again as a group. We found that the most hurtful issues were discovering their infertility from KS and late disclosure. From the perspective of unaffected adolescent males, early disclosure in early or mid-teens in a neutral, supportive, and relaxed manner, along with information on benefits of hormonal treatment, the assurance of biological sex as "male," and avoidance of some sensitive words are strongly recommended, as a way to promote self-confidence and positive coping with the diagnosis. After intervention, the parents reported more confidence and less anxiety about disclosing the diagnosis to their children, and indicated that they would disclose KS at an earlier age. For unaffected adolescent males, though it is a hypothetical scenario and their reaction may differ from affected adolescents, unaffected adolescent males' viewpoints on how they might react are more or less representative of cultural changes for the new generation, especially in the Asian context. In addition, their viewpoints influenced parents' decision and genetic counseling plans for the diagnosis disclosure of KS to their children. We propose a preliminary guideline for KS diagnosis disclosure.
| S-EPMC7062947 | biostudies-literature
Project description:Indoor pollutants can have short- and long-term health effects, especially if exposure occurs during prenatal life or early childhood. This study describe the perceptions, knowledge, and practices of adults concerning indoor environmental pollution. Adults of 18 to 45 years of age were recruited in the department of Ille-et-Vilaine (Brittany-France) in 2019 through a stratified random draw in the waiting rooms of general practitioners (GPs) (n = 554) who completed a self-questionnaire. The 71% who had already heard of this type of pollution were older (p = 0.001), predominantly women (p = 0.007), not expecting a baby (p = 0.005), and had a higher knowledge score (p < 0.001). The average knowledge score was 6.6 ± 6.6 out of 11, which was higher for participants living in a couple and with a higher level of education (p < 0.001). Some practices were well implemented (>80% of participants) (aeration during renovation) whereas others were insufficiently practiced (<60% of participants) (paying attention to the composition of cosmetic products). Factors associated differed depending on the frequency of integration: living in a couple and having a child for well implemented practices and educational level, knowledge level, and perception for those under implemented. Knowledge must be improved to modify perceptions and certain practices, making sure not to increase social inequalities in health.
| S-EPMC7589174 | biostudies-literature
Project description:Objective:Neuroaxonal damage is reflected by serum neurofilament light chain (sNfL) values in a variety of acute and degenerative diseases of the brain. The aim of this study was to investigate the impact of febrile and epileptic seizures on sNfL, serum copeptin, and prolactin levels in children compared with children with febrile infections without convulsions. Methods:A prospective cross-sectional study was performed in children aging 6 months to 5 years presenting with fever (controls, n = 61), febrile seizures (FS, n = 78), or epileptic seizures (ES, n = 16) at our emergency department. sNfL, copeptin, and prolactin were measured within a few hours after the event in addition to standard clinical, neurophysiological, and laboratory assessment. All children were followed up for at least 1 year after presentation concerning recurrent seizures. Results:Serum copeptin values were on average 4.1-fold higher in FS and 3.2-fold higher in ES compared with controls (both p < 0.01). Serum prolactin values were on average 1.3-fold higher in FS compared with controls (?p < 0.01) and without difference between ES and controls. There was no significant difference of mean sNfL values (95% CI) between all three groups, FS 21.7 pg/ml (19.6-23.9), ES 17.7 pg/ml (13.8-21.6), and controls 23.4 pg/ml (19.2-27.4). In multivariable analysis, age was the most important predictor of sNfL, followed by sex and C reactive protein. Neither the duration of seizures nor the time elapsed from seizure onset to blood sampling had an impact on sNfL. None of the three biomarkers were related to recurrent seizures. Significance:Serum neurofilament light is not elevated during short recovery time after FS when compared with children presenting febrile infections without seizures. We demonstrate an age-dependent decrease of sNfL from early childhood until school age. In contrast to sNfL levels, copeptin and prolactin serum levels are elevated after FS.
| S-EPMC7550525 | biostudies-literature
Project description:AimsTo identify novel pathogenic gene of febrile seizures (FS)/epilepsy with antecedent FS (EFS+).MethodsThe trio-based whole-exome sequencing was performed in a cohort of 462 cases with FS/EFS+. Silico programs, sequence alignment, and protein modeling were used to predict the damaging of variants. Statistical testing was performed to analyze gene-based burden of variants.ResultsFive heterozygous missense variants in CELSR3 were detected in five cases (families) with eight individuals (five females, three males) affected. Two variants were de novo, and three were identified in families with more than one individual affected. All the variants were predicted to be damaging in silico tools. Protein modeling showed that the variants resulted in disappearance of multiple hydrogen bonds and one disulfide bond, which potentially caused functional impairments of protein. The frequency of CELSR3 variants identified in this study was significantly higher than that in controls. All affected individuals were diagnosed with FS/EFS+, including six patients with FS and two patients with EFS+. All cases presented favorable outcomes without neurodevelopmental disorders.ConclusionsCELSR3 variants are potentially associated with FS/EFS+.
| S-EPMC8841303 | biostudies-literature
Project description:PurposeTo identify novel genetic causes of febrile seizures (FS) and epilepsy with febrile seizures plus (EFS+).MethodsWe performed whole-exome sequencing in a cohort of 32 families, in which at least two individuals were affected by FS or EFS+. The probands, their parents, and available family members were recruited to ascertain whether the genetic variants were co-segregation. Genes with repetitively identified variants with segregations were selected for further studies to define the gene-disease association.ResultsWe identified two heterozygous ATP6V0C mutations (c.64G > A/p.Ala22Thr and c.361_373del/p.Thr121Profs*7) in two unrelated families with six individuals affected by FS or EFS+. The missense mutation was located in the proteolipid c-ring that cooperated with a-subunit forming the hemichannel for proton transferring. It also affected the hydrogen bonds with surround residues and the protein stability, implying a damaging effect. The frameshift mutation resulted in a loss of function by yielding a premature termination of 28 residues at the C-terminus of the protein. The frequencies of ATP6V0C mutations identified in this cohort were significantly higher than that in the control populations. All the six affected individuals suffered from their first FS at the age of 7-8 months. The two probands later manifested afebrile seizures including myoclonic seizures that responded well to lamotrigine. They all displayed favorable outcomes without intellectual or developmental abnormalities, although afebrile seizures or frequent seizures occurred.ConclusionThis study suggests that ATP6V0C is potentially a candidate pathogenic gene of FS and EFS+. Screening for ATP6V0C mutations would help differentiating patients with Dravet syndrome caused by SCN1A mutations, which presented similar clinical manifestation but different responses to antiepileptic treatment.
| S-EPMC9120599 | biostudies-literature
Project description:BackgroundSoil-transmitted helminthes (STHs) are common human parasitic diseases in most of the developing world particularly in Kenya. The ongoing National School-Based Deworming Programme (NSBDP) was launched in 2012 and is currently targeting 28 of the 47 endemic Counties. In an effort to improve treatment intervention strategies among Pre-School Age Children (PSAC) attending Early Childhood Development Centres (ECDC), we sought to assess parents' knowledge, perceptions and practices on worm infection.MethodologyWe conducted a qualitative cross-sectional study in four endemic sub-counties of two counties of coastal region of Kenya. A total of 20 focus group discussions (FGDs) categorized by gender were conducted among parents of pre-school age children. Participants were purposively selected based on homogenous characteristics with the saturation model determining the number of focus group discussions conducted. The data collected was analyzed manually by study themes.FindingsThe majority of the parents had knowledge on worms and modes of transmission of the parasitic infections among the pre-school children. Also, most of the participants knew the causes of worm infection and the pre- disposing factors mentioned included poor hygiene and sanitation practices. Due to poor knowledge of signs and symptoms, misconceptions about the drugs administered during the NSBDP were common with a large majority of the parents indicating that the drugs were ineffective in worm control. The findings also indicated that most of the participants sought medical care on the onset of the signs and symptoms of worm infestation and preferred services provided at public health facilities as opposed to private health facilities or buying drugs from the local market citing mistrust of such services. Cultural beliefs, high cost of building and availability of vast pieces of land for human waste disposal were factors that contributed to low or lack of latrine ownership and usage by a large majority of the respondents.ConclusionsOur results show that to a large extent the parents of the pre-school age children have information on worm infections. However, some cultural beliefs and practices on the pathology and mode of transmission mentioned could be a hindrance to prevention and control efforts. There is need to implement health promotion campaigns to strengthen the impact of control strategies and reduce infection.
| S-EPMC5388494 | biostudies-literature
Project description:Recommendations to guide parents' symptomatic management of febrile illnesses in children have been published in many countries. The lack of systematic appraisal of parents' knowledge and behaviors and their evolution over time precludes an analysis of their impact and identification of targets for future educational messages. We systematically searched for studies published between 1980 and 2016 that reported a quantitative evaluation of knowledge and behaviors of >50 parents for managing fever in children. We used MEDLINE and tracked related articles, citations and co-authors personal files. Study selection and data extraction were independently performed by two reviewers. For each item of knowledge and behaviors, we calculated mean frequencies during the first and last quinquennials of the studied period and assessed temporal trends with inverse-variance weighted linear regression of frequencies over years. We observed substantial methodological heterogeneity among the 62 included articles (64 primary studies, 36,791 participants, 30 countries) that met inclusion criteria. Statistically significant changes over time were found in the use of rectal (98 to 4%) and axillary temperature measurement (1-19%), encouraging fluid intake (19-62%), and use of acetylsalicylic acid (60 to 1%). No statistically significant change was observed for the accurate definition of fever (38-55%), or the use of acetaminophen (91-92%) or ibuprofen (20-43%). Parents' knowledge and behaviors have changed over time but continue to show poor concordance with recommendations. Our study identified future targets for educational messages, including basic ones such as the definition of fever.
| S-EPMC6183237 | biostudies-literature
Project description:Febrile seizures (FS) are the most common type of seizure during childhood, reportedly occurring in 2-5% of children aged 6 months to 5 years. However, there are no national data on the prevalence of FS in Korea. This study determined the prevalence, incidence, and recurrence rates of FS in Korean children using national registry data.The data were collected from the Korea National Health Insurance Review and Assessment Service for 2009-2013. Patients with febrile convulsion as their main diagnosis were enrolled. The overall prevalence of FS in more than 2 million children younger than 5 years was estimated, and the incidence and recurrence rates of FS were determined for children born in 2009.The average prevalence of FS in children younger than 5 years based on hospital visit rates in Korea was 6.92% (7.67% for boys and 6.12% for girls). The prevalence peaked in the second to third years of life, at 27.51%. The incidence of FS in children younger than 5 years (mean 4.5 years) was 5.49% (5.89% for boys and 5.06% for girls). The risk of first FS was highest in the second year of life. The overall recurrence rate was 13.04% (13.81% for boys and 12.09% for girls), and a third episode of FS occurred in 3.35%.Our study determined the overall prevalence of FS using data for the total population in Korea. The prevalence was comparable to that reported for other countries. Patients with three episodes of FS need to be monitored carefully.
| S-EPMC5765255 | biostudies-other
Project description:IntroductionHuman papilloma virus (HPV) is a renowned cause of cervical cancer, which has resulted in high mortality of individuals. Cervical cancer could be reduced by screening and HPV vaccination. This study investigated knowledge, attitudes and perceptions of parents towards HPV vaccines in Ibadan, South-West L.G.A, Oyo State, Nigeria.MethodsA cross-sectional descriptive design was used with a multi-stage sampling technique to select 186 parents from Ibadan South-West local government area of Oyo state. A validated structured questionnaire (r=0.78) was used for data collection.ResultsThe mean age of the respondents was 30.2 years. The parents had good knowledge of the HPV vaccine (mean=3.12) and most had a high level of knowledge (98.9%). Parents demonstrated negative attitude (mean=2.97) and positive perception to HPV vaccines. Major factors affecting their attitude towards the uptake of HPV vaccines were: finance (86%), level of education (81%), distance to health facilities (83%), inadequate knowledge about the vaccine (89%), fear of promiscuity (82%), and concern about adverse effect (80%).ConclusionsFactors responsible for a negative attitude were the high cost, distance from vaccination site, inadequate knowledge, fear of subsequent adolescent promiscuity and concern about adverse effects. In light of the benefits of HPV vaccination, the Nigerian government should make HPV vaccines available, affordable, and accessible to the public.
| S-EPMC7839110 | biostudies-literature
Project description:ObjectivesResearch has shown that physicians are encountering an increase in vaccine-hesitant parents (VHPs) numbers. This study examined physicians' vaccination knowledge, vaccine-related discussions with VHPs, beliefs about and responses to vaccine hesitancy, and challenges faced while discussing immunization with VHPs.MethodsThis cross-sectional, descriptive study was performed at King Saud University Medical City (KSUMC), Riyadh, Saudi Arabia, in September 2020. The data were collected through a questionnaire distributed via email. The sample comprised 90 physicians who routinely treat children and reported they frequently have appropriate vaccine discussions when encountering VHPs.ResultsNinety participants (59% were females) completed the questionnaire. Of these, 37.8% were from family medicine, 7.8% from primary care, and 54.4% from paediatrics. The most discussed topics were vaccine necessity, reasons for vaccine refusal, and vaccine safety. Seventeen participants (18.8%) reported being extremely confident, and (42.2%) were confident in their vaccine-specific knowledge. Regarding confidence in communication skills, 22.2% reported being extremely confident and (45.6%) were confident. Determinants of higher confidence in the knowledge and communication skills were physician age (p = 0.001 and p = 0.0001, respectively), years of practice (p = 0.002 and (p = 0.005), and patients seen per workday (p = 0.0001 and p = 0.024). Other factors such as physician sex (p = 0.062), the field of practice (p = 0.329), and hours of work per week (p = 0.061) were not significantly different. Forty-six (51%) physicians sometimes find it challenging to conduct appropriate vaccine-related discussions because of having too many other issues to discuss during the consultation. Furthermore, 53 (59%) participants agreed/strongly agreed that parental refusal to vaccinate would raise suspicions of negligence. On the other hand, 59 (65%) disagreed/strongly disagreed that parental refusal of vaccines is a parental right. Participants expressed the need to refer VHPs to a specialised advisory clinic with excellent experience and negotiation skills to overcome the challenges.ConclusionVaccine safety and necessity are the topics of most concern to VHPs, and a knowledgeable physician with competent communication skills is critical in responding to such situations. This study highlights the most reported barriers to successful vaccine-related discussions. It raises underlying ethical principles such as parental autonomy and the need to train physicians in VHPs. To train physians for succucful vaccine counceling of VHPs.
| S-EPMC10478439 | biostudies-literature