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1.
BMC Med ; 22(1): 338, 2024 Aug 26.
Artigo em Inglês | MEDLINE | ID: mdl-39183288

RESUMO

BACKGROUND: Antenatal steroid therapy for fetal lung maturation is routinely administered to women at risk of preterm delivery. There is strong evidence to demonstrate benefit from antenatal steroids in terms of survival and respiratory disease, notably in infants delivered at or below 32 weeks' gestation. However, dosing remains unoptimized and lung benefits are highly variable. Current treatment regimens generate high-concentration, pulsatile fetal steroid exposures now associated with increased risk of childhood neurodevelopmental diseases. We hypothesized that damage-associated changes in the fetal hippocampal transcriptome would be independent of preterm lung function. METHODS: Date-mated ewes carrying a single fetus at 122 ± 2dGA (term = 150dGA) were randomized into 4 groups: (i) Saline Control Group, 4×2ml maternal saline intramuscular(IM) injections at 12hr intervals (n = 11); or (ii) Dex High Group, 2×12mg maternal IM dexamethasone phosphate injections at 12hr intervals followed by 2×2ml IM saline injections at 12hr intervals (n = 12; representing a clinical regimen used in Singapore); or (iii) Dex Low Group, 4×1.5mg maternal IM dexamethasone phosphate injections 12hr intervals (n = 12); or (iv) Beta-Acetate Group, 1×0.125mg/kg maternal IM betamethasone acetate injection followed by 3×2ml IM sterile normal saline injections 12hr intervals (n = 8). Lambs were surgically delivered 48hr after first maternal injection at 122-125dGA, ventilated for 30min to establish lung function, and euthanised for necropsy and tissue collection. RESULTS: Preterm lambs from the Dex Low and Beta-Acetate Groups had statistically and biologically significant lung function improvements (measured by gas exchange, lung compliance). Compared to the Saline Control Group, hippocampal transcriptomic data identified 879 differentially significant expressed genes (at least 1.5-fold change and FDR < 5%) in the steroid-treated groups. Pulsatile dexamethasone-only exposed groups (Dex High and Dex Low) had three common positively enriched differentially expressed pathways related in part to neurodegeneration ("Prion Disease", "Alzheimer's Disease", "Arachidonic Acid metabolism"). Adverse changes were independent of respiratory function during ventilation. CONCLUSIONS: Our data suggests that exposure to antenatal steroid therapy is an independent cause of damage- associated transcriptomic changes in the brain of preterm, fetal sheep. These data highlight an urgent need for careful reconsideration and balancing of how antenatal steroids are used, both for patient selection and dosing regimens.


Assuntos
Hipocampo , Pulmão , Animais , Hipocampo/efeitos dos fármacos , Hipocampo/metabolismo , Ovinos , Feminino , Pulmão/efeitos dos fármacos , Pulmão/metabolismo , Gravidez , Dexametasona/farmacologia , Betametasona/administração & dosagem , Feto/efeitos dos fármacos
2.
Matern Child Health J ; 28(6): 1080-1085, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38252330

RESUMO

INTRODUCTION: The aims of the study are to: (1) determine the short-term reactogenicity of WHO-approved COVID-19 vaccines (i.e., Pfizer-BioNTech, Moderna, Sinovac, Oxford-AstraZeneca, Johnson and Johnson, Covaxin) amongst lactating women and their children, and 2) evaluate lactation-related outcomes following the same vaccines in Bangladesh. METHODS: This was a multi-centre, self-reported, cross-sectional study of lactating woman-child dyads in Bangladesh. Demographics, past medical history, breastfeeding history and clinical outcomes of lactating woman-child dyads at least 7 days after the last dose of vaccine were determined through a structured questionnaire. RESULTS: There were 750 participants from four centres. The mean age of lactating women and children surveyed were 27.6 (SD ± 4.6) years and 10.3 (SD ± 6.7) months, respectively. Majority (81.2%; 608 of 750) received 2 doses of COVID-19 vaccinations while lactating. Almost all (99.9%; 749 of 750) vaccinated lactating women surveyed reported no change in human milk supply. More than half of the participants (56.9%; 373 of 656) reported no symptoms after both doses of COVID-19 vaccines. There were no serious adverse events such as anaphylaxis or hospital admission. Majority of the lactating women (98.9%; 742 of 750) reported that the children whom they breastfed had no symptoms such as fever or cough. DISCUSSION: This large study of lactating woman-child dyads in Bangladesh, who received a diverse range of WHO-approved COVID-19 vaccines, showed no serious short-term adverse effects.


Assuntos
Aleitamento Materno , Vacinas contra COVID-19 , COVID-19 , Lactação , SARS-CoV-2 , Adulto , Feminino , Humanos , Lactente , Masculino , Bangladesh , Aleitamento Materno/estatística & dados numéricos , COVID-19/prevenção & controle , COVID-19/epidemiologia , Vacinas contra COVID-19/administração & dosagem , Vacinas contra COVID-19/efeitos adversos , Estudos Transversais , Leite Humano/imunologia , Mães/psicologia , Mães/estatística & dados numéricos , Inquéritos e Questionários , Adulto Jovem
3.
BMC Palliat Care ; 23(1): 66, 2024 Mar 08.
Artigo em Inglês | MEDLINE | ID: mdl-38454420

RESUMO

BACKGROUND: Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility. METHODS: For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content. RESULTS: The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS). CONCLUSIONS: PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.


Assuntos
Pais , Qualidade da Assistência à Saúde , Criança , Humanos , Pais/psicologia , Cuidadores , Pessoal de Saúde , Consenso , Inquéritos e Questionários
4.
Qual Life Res ; 32(7): 1859-1869, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-36484947

RESUMO

PURPOSE: To synthesize evidence on the impact of bronchopulmonary dysplasia (BPD) on the Quality of Life (QoL) of affected individuals from three perspectives: (i) QoL of caregiver; (ii) caregiver's perception of BPD patient's QoL; and (iii) BPD patient's self-reported QoL. METHODS: Quantitative studies (case-control, cohort, and case series) on the QoL of BPD patients or their caregivers were considered. We conducted a systematic literature search of 6 databases (PubMed, Embase, World of Science, CINAHL, PsycINFO, and Chinese National Knowledge Infrastructure) for relevant studies. All databases were searched from the date of inception of the databases to 31 March 2022. Populations of interest were caregivers with preterm babies with BPD, or children/adults who were born premature and diagnosed with BPD. The main outcome measures were total and subdomain QoL scores, and factors affecting QoL. RESULTS: A total of 1078 articles were found; 10 were eligible for analysis, which included 247 caregivers and 1632 patients with BPD. The QoL of patients differed by domains-some were poorer or similar, but none of the QoL domains was better than QoL of healthy controls. Poor sleep and acute care needs of BPD patients negatively affected caregiver's QoL, while increasing illness acuity negatively affected the QoL of BPD patients. The QoL of BPD patients and their caregivers was most adversely affected during the immediate post-discharge period and tended to improve with time. The physical QoL of BPD patients was similar to that of preterm babies without BPD when assessed during late childhood and early adulthood. CONCLUSION: QoL assessment should be performed as an outcome measure and incorporated in the care plan for BPD patients and their caregivers. Systematic Review Registration PROSPERO CRD42021292253.


Assuntos
Displasia Broncopulmonar , Recém-Nascido , Lactente , Adulto , Humanos , Criança , Qualidade de Vida/psicologia , Cuidadores , Assistência ao Convalescente , Alta do Paciente
5.
Bull World Health Organ ; 100(1): 10-19, 2022 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-35017753

RESUMO

OBJECTIVE: To describe the implementation, coverage and performance of the national kangaroo mother care programme in Bangladesh. METHODS: Kangaroo mother care services for clinically stable babies with birth weight under 2000 g were set up in government-run health-care facilities in rural and urban areas of Bangladesh. Each facility provided counselling on kangaroo mother care, ensured adequate nutrition, and followed up mothers and babies. We studied implementation of the programme from January 2016 to March 2020 using data from the national database. We tracked the number of eligible babies enrolled and their outcomes, mortality and post-discharge follow-up. FINDINGS: The numbers of kangaroo mother care facilities increased from 16 in 2016 to 108 in 2020. Over the 4-year period 64 426 babies weighing under 2000 g were born in these facilities, 6410 of whom received kangaroo mother care. The quarterly percentage of eligible babies receiving kangaroo mother care increased from 4.7% (37/792) during the first quarter to 21.7% (917/4226) during the last five quarters of the programme. Deaths of babies receiving kangaroo mother care showed a downward trend over the study period. The overall mortality was 1.2% (77/6410), with large quarterly fluctuations in mortality. Post-discharge follow-up was low and only 15-20% of babies received four follow-up visits. CONCLUSION: Implementation of kangaroo mother care interventions is feasible in low-resource settings. Such care has the potential to reduce mortality among low-birth-weight and premature babies. Challenges include low coverage, expanding the programme to the community and strengthening the monitoring system.


Assuntos
Método Canguru , Assistência ao Convalescente , Bangladesh , Criança , Feminino , Humanos , Lactente , Mortalidade Infantil , Alta do Paciente
6.
BMC Pediatr ; 21(1): 457, 2021 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-34663266

RESUMO

BACKGROUND: Optimal management of haemodynamically significant patent ductus arteriosus (HsPDA) in premature babies remains controversial. Our aim is to compare death and/or adverse neurodevelopmental outcomes in extremely low birth weight (ELBW) infants with HsPDA who were managed with conservative [C], medical [M] and/or surgical [S] treatment, with secondary aim to examine short-term morbidities among [S] and [C] groups. The study also compared outcomes in very low birth weight (VLBW) infants with HsPDA and non-HsPDA. METHODS: A retrospective study of VLBW preterm infants born before 29 weeks in Singapore from 2007 to 2016 was conducted. RESULTS: A total of 474 VLBW infants were admitted in NUH from 2007 to 2016. Infants aged between 24 + 0 and 28 + 6 weeks of gestation, weighing ≤1500 g and diagnosed with patent ductus arteriosus (PDA) were included in the study, of which 172 infants (124 HsPDA and 48 non-HsPDA) were analyzed. Among infants with HsPDA, 17 infants were managed with [C], 83 with [M] and 24 with [S]. Mortality was not increased regardless of the presence of HsPDA or treatment received. Infants with non-HsPDA were less likely to have isolated speech delay (p < 0.05), but not global developmental delay (GDD). No significant differences in neurodevelopmental outcomes such as hearing loss, cerebral palsy (CP) and speech delay were found. [M + S] infants were at a higher risk of developing chronic lung disease (CLD) (OR 6.83, p < 0.05) and short-term growth failure compared to [C] infants. They were significantly shorter and had a smaller head circumference at discharge (p < 0.05). [M + S] infants also had elevated creatinine compared to those in group [C] (81.1 ± 24.1 vs 48.3 ± 11.8 umol/L, p < 0.000). CONCLUSIONS: Compared to conservative management, infants requiring [M + S] treatment for HsPDA were more likely to have short-term complications such as CLD, elevated creatinine, and poorer growth. Despite a more turbulent postnatal course, death and/or adverse neurodevelopmental outcomes were not worse in infants managed with [M + S].


Assuntos
Permeabilidade do Canal Arterial , Permeabilidade do Canal Arterial/terapia , Humanos , Ibuprofeno , Lactente , Recém-Nascido de Peso Extremamente Baixo ao Nascer , Recém-Nascido , Recém-Nascido Prematuro , Estudos Retrospectivos
7.
Am J Perinatol ; 38(13): 1420-1427, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-32526778

RESUMO

OBJECTIVE: Parents of preterm, very low birthweight (VLBW) infants in neonatal intensive care units (NICU) undergo emotional turmoil. Studies on parent's experiences typically focus on the maternal perspective. The purpose of the study is to explore the emotional needs and experiences of fathers of VLBW neonates in the NICU and to identify ways to improve their experiences. STUDY DESIGN: This was a qualitative descriptive design study undertaken at the NICU of a tertiary university hospital. Convenience sampling with predefined inclusion and exclusion criteria was used to identify prospective participants. Semi-structured interviews were conducted with 15 fathers of infants until data saturation was reached. The COREQ (Consolidated Criteria for Reporting Qualitative Studies) checklist was used. RESULTS: Father's experiences were classified into the topics of concerns, roles, and perspectives. Uncertainty was a predominant theme in each of these. Fathers assume multiple roles toward the child, wife, self, and family. Their concerns were multifaceted involving the child, family, work, and finances; they experienced a myriad of emotions, but these evolved into resilience eventually. CONCLUSION: Fathers have unique concerns pertinent to having an infant in the NICU. They juggle multiple roles and transition to emotions of resilience. It is imperative to acknowledge the uncertainty and diverse roles of fathers, provide them with customized information, and develop more balanced parent-support groups. KEY POINTS: · Fathers juggle multiple roles with a child in NICU.. · Uncertainty is a key part of their experience.. · Acknowledging their role and emotions is important..


Assuntos
Pai/psicologia , Recém-Nascido Prematuro , Recém-Nascido de muito Baixo Peso , Unidades de Terapia Intensiva Neonatal , Poder Familiar/etnologia , Adulto , Povo Asiático , Feminino , Papel de Gênero , Humanos , Recém-Nascido , Entrevistas como Assunto , Masculino , Singapura , Incerteza
8.
Am J Perinatol ; 37(13): 1377-1384, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32898920

RESUMO

The novel coronavirus disease 2019 (COVID-19) pandemic has resulted in changes to perinatal and neonatal care, concentrating on minimizing risks of transmission to the newborn and health care staff while ensuring medical care is not compromised for both mother and infant. Current recommendations on infant care and feeding when mother has COVID-19 ranges from mother-infant separation and avoidance of human milk feeding, to initiation of early skin-to-skin contact and direct breastfeeding. Health care providers fearing risks of severe acute respiratory syndrome-coronavirus-2 (SARS-CoV-2) maternal-infant transmission may veer toward restricted breastfeeding practices. We reviewed guidelines and published literature and propose three options for infant feeding depending on various scenarios. Option A involves direct breastfeeding with the infant being cared for by the mother or caregiver. In option B, the infant is cared for by another caregiver and receives mother's expressed milk. In the third option, the infant is not breastfed directly and does not receive mother's expressed milk. We recommend joint decision making by parents and the health care team. This decision is also flexible as situation changes. We also provide a framework for counseling mothers on these options using a visual aid and a corresponding structured training program for health care providers. Future research questions are also proposed. We conclude that evidence and knowledge about COVID-19 and breastfeeding are still evolving. Our options can provide a quick and flexible reference guide that can be adapted to local needs. KEY POINTS: · SARS-CoV-2 is unlikely transmitted via human milk.. · A shared decision making on infant feeding is the preferred approach.. · Mothers can safely breastfeed with appropriate infection control measures..


Assuntos
Aleitamento Materno/métodos , Infecções por Coronavirus , Controle de Infecções/métodos , Transmissão Vertical de Doenças Infecciosas/prevenção & controle , Leite Humano/virologia , Pandemias , Pneumonia Viral , Complicações Infecciosas na Gravidez , Betacoronavirus , COVID-19 , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/prevenção & controle , Aconselhamento/métodos , Tomada de Decisões , Feminino , Humanos , Recém-Nascido , Comportamento Materno , Mães/psicologia , Pandemias/prevenção & controle , Pneumonia Viral/epidemiologia , Pneumonia Viral/prevenção & controle , Gravidez , Complicações Infecciosas na Gravidez/epidemiologia , Complicações Infecciosas na Gravidez/prevenção & controle , Risco Ajustado/métodos , SARS-CoV-2
9.
Med Teach ; 40(sup1): S30-S36, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29792543

RESUMO

OBJECTIVE: The purpose of this paper is to describe the process of adopting the Canadian Medical Education Directions for Specialists (CanMEDS) 2015 competency framework in a dental specialty program to reconstruct the Saudi Board in Restorative Dentistry (SBRD) curriculum and disseminate the lessons learned. Method and development process: The process of curriculum development was started with the selection of SBRD curriculum committee and review of CanMEDS framework. The Committee conducted needs assessment among the stakeholders and adopted CanMEDS 2015 competencies through a careful process. A modeled curriculum was developed after taking feedback, review of existing literature, and unique context of dentistry. Curriculum: Several unique features are incorporated. For example, milestones and continuum of learning are developed to enable residents develop competencies at different stages (transition to discipline, foundation of discipline, and core of discipline). Academic activities are restructured to encourage interactive, student-centered approaches, team work, intellectual curiosity, and scholarship. Learning outcomes are integrated throughout within several modules. Many formative assessment tools are adopted to promote learning and evaluate clinical skills. CONCLUSIONS: This is the first published example of adopting CanMEDS competency framework in a dental specialty program. The success of developing SBRD curriculum has encouraged other dental specialties toward adopting CanMEDS 2015 frameworks for their own curricula.


Assuntos
Educação Baseada em Competências/normas , Currículo/estatística & dados numéricos , Educação em Odontologia/normas , Canadá , Odontologia/organização & administração , Difusão de Inovações , Humanos , Modelos Educacionais , Avaliação de Programas e Projetos de Saúde , Arábia Saudita
10.
Med Teach ; 36 Suppl 1: S43-8, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24617784

RESUMO

BACKGROUND: Medical students' academic achievement is affected by many factors such as motivational beliefs and emotions. Although students with high intellectual capacity are selected to study medicine, their academic performance varies widely. OBJECTIVES: The aim of this study is to explore the high achieving students' perceptions of factors contributing to academic achievement. MATERIALS AND METHODS: Focus group discussions (FGD) were carried out with 10 male and 9 female high achieving (scores more than 85% in all tests) students, from the second, third, fourth and fifth academic years. During the FGDs, the students were encouraged to reflect on their learning strategies and activities. The discussion was audio-recorded, transcribed and analysed qualitatively. RESULTS: Factors influencing high academic achievement include: attendance to lectures, early revision, prioritization of learning needs, deep learning, learning in small groups, mind mapping, learning in skills lab, learning with patients, learning from mistakes, time management, and family support. Internal motivation and expected examination results are important drivers of high academic performance. Management of non-academic issues like sleep deprivation, homesickness, language barriers, and stress is also important for academic success. CONCLUSION: Addressing these factors, which might be unique for a given student community, in a systematic manner would be helpful to improve students' performance.


Assuntos
Aprendizagem , Motivação , Estudantes de Medicina/psicologia , Adulto , Barreiras de Comunicação , Escolaridade , Família , Feminino , Grupos Focais , Humanos , Masculino , Pesquisa Qualitativa , Apoio Social , Estresse Psicológico/terapia , Gerenciamento do Tempo
11.
Pak J Med Sci ; 30(2): 227-32, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24772117

RESUMO

OBJECTIVE: To evaluate assessment system of the 'Research Methodology Course' using utility criteria (i.e. validity, reliability, acceptability, educational impact, and cost-effectiveness). This study demonstrates comprehensive evaluation of assessment system and suggests a framework for similar courses. METHODS: Qualitative and quantitative methods used for evaluation of the course assessment components (50 MCQ, 3 Short Answer Questions (SAQ) and research project) using the utility criteria. RESULTS of multiple evaluation methods for all the assessment components were collected and interpreted together to arrive at holistic judgments, rather than judgments based on individual methods or individual assessment. RESULTS: Face validity, evaluated using a self-administered questionnaire (response rate-88.7%) disclosed that the students perceived that there was an imbalance in the contents covered by the assessment. This was confirmed by the assessment blueprint. Construct validity was affected by the low correlation between MCQ and SAQ scores (r=0.326). There was a higher correlation between the project and MCQ (r=0.466)/SAQ (r=0.463) scores. Construct validity was also affected by the presence of recall type of MCQs (70%; 35/50), item construction flaws and non-functioning distractors. High discriminating indices (>0.35) were found in MCQs with moderate difficulty indices (0.3-0.7). Reliability of the MCQs was 0.75 which could be improved up to 0.8 by increasing the number of MCQs to at least 70. A positive educational impact was found in the form of the research project assessment driving students to present/publish their work in conferences/peer reviewed journals. Cost per student to complete the course was US$164.50. CONCLUSIONS: The multi-modal evaluation of an assessment system is feasible and provides thorough and diagnostic information. Utility of the assessment system could be further improved by modifying the psychometrically inappropriate assessment items.

12.
Front Pediatr ; 12: 1377290, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39100651

RESUMO

Background: Imperforate hymen is an uncommon obstructive anomaly of the developing female reproductive tract. There are occasional case reports of imperforate hymen occurring in family clusters, suggesting a plausible familial mode of inheritance. We describe a set of monozygotic premature twins with imperforate hymen noted at birth, whose mother was diagnosed with the same condition as a teenager. We also elucidate the likely underlying mode of inheritance of imperforate hymen. Method: We utilized the CARE (Case Report) guideline in reporting the cases. Case presentation: These are monozygotic twins born prematurely at 30 weeks of gestation, noted at birth to have bulging cyst-like structures protruding from their vaginas. The twins were not dysmorphic and did not have any other congenital malformations. Over the next few weeks, these cyst-like structures (mucoceles) became less prominent. The genital anomaly was diagnosed as imperforate hymen. Their mother was also diagnosed with an imperforate hymen when she was 12 years old and was treated with hymenectomy. Discussion: This unique occurrence of imperforate hymen in a set of premature monozygotic twins and their mother suggests a plausible autosomal or X-linked dominant mode of inheritance. Given the role of genetic inheritance in imperforate hymen development, it is important to screen female relatives of an index case for this genital anomaly.

13.
Ann Acad Med Singap ; 53(8): 490-501, 2024 Aug 19.
Artigo em Inglês | MEDLINE | ID: mdl-39230317

RESUMO

Introduction: The aims of this systematic review and meta-analysis are to synthesise quality of life (QOL) of family caregivers of children and young adults with Down syndrome (DS) and determine factors affecting their QOL. Method: This review was conducted as per Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline. Key search terms were "quality of life", "down syndrome" and "trisomy 21". Meta-analysis using random effect model was conducted where feasible. All studies underwent qualitative synthesis. The study protocol was registered with PROSPERO (CRD42023413532). Results: Eighteen studies with 1956 caregivers were included. Of the 10 studies utilising the World Health Organization Quality of Life Instrument-Brief Version, 5 were included in the meta-analysis. Psychosocial domain had the highest score with mean (95% confidence interval [CI]) of 63.18 (39.10-87.25). Scores were poorer in physical, environmental and social domains: 59.36 (28.24-90.48), 59.82 (19.57-100.07) and 59.83 (44.24-75.41), respectively. Studies were heterogenous with I2 values ranging from 99-100% (P<0.01). The remaining 8 studies used 6 other instruments. Qualitative synthesis revealed that caregivers' QOL was adversely affected by child-related factors, such as level of functional independence, developmental delay, presence of multiple comorbidities, impaired activities of daily living and poor sleep quality. Environmental factors that adversely affected caregivers' QOL included number of children, housing and support from the family. Personal factors that affected caregivers' QOL included age, being a single mother, low education and low income. Conclusion: QOL of caregivers of children with DS was lower than population reference data. Understand-ing the factors that influence family caregivers' QOL is an essential step towards improving the QOL of caregivers and their children with DS.


Assuntos
Cuidadores , Síndrome de Down , Qualidade de Vida , Adolescente , Adulto , Criança , Humanos , Adulto Jovem , Cuidadores/psicologia , Síndrome de Down/psicologia , Síndrome de Down/terapia
14.
Ann Acad Med Singap ; 53(8): 502-513, 2024 Aug 14.
Artigo em Inglês | MEDLINE | ID: mdl-39230318

RESUMO

Introduction: Down syndrome (DS) negatively impacts the well-being of affected individuals. This study aimed to summarise the evidence on quality of life (QOL) of children and young adults with DS using quantitative measures from caregivers' perspective and identify factors that affected their QOL. Method: Database search was conducted on PubMed, Embase, Web of Science and CINAHL on 24 April 2024. Meta-analysis using random effects model was conducted where feasible. All studies underwent qualitative synthesis. The study protocol was registered with PROSPERO (CRD42023413532). Results: Seventeen studies involving 3038 children with DS using various QOL measures were included: Pediatric Quality of Life Inventory (PedsQL) (8 studies), KIDSCREEN (4 studies), KidsLife (2 studies), The Netherlands Organization for Applied Scientific Research Academic Medical Center Children's QOL (2 studies) and Personal Outcome Scale (1 study). Meta-analysis on PedsQL studies compared scores between children with DS and typically developing (TD) children. Total scale score was lower in children with DS (mean 70.28, 95% confidence interval [CI] 64.31-76.24) compared to TD children (mean 88.17, 95% CI 80.50-95.83). All subdomains of PedsQL were also lower in children with DS. Within the domain of psychosocial health, children with DS had statistically significant lower social functioning (standardised mean difference -1.40, 95% CI -2.27 to -0.53) and school functioning (standardised mean difference -1.09, 95% CI -1.55 to -0.62) scores, but similar emotional functioning scores. Qualitative synthesis revealed poorer subdomain QOL compared to TD children, especially in social functioning and cognitive functioning. QOL worsened during adolescent years. Family variables (parental education and occupation) did not affect parental perception of children's QOL. Children with DS who had higher intelligent quotient had better QOL. Conclusion: Children with DS have lower caregiver-reported QOL than TD children, especially in social functioning and school functioning subdomains.


Assuntos
Cuidadores , Síndrome de Down , Qualidade de Vida , Adolescente , Criança , Humanos , Adulto Jovem , Cuidadores/psicologia , Síndrome de Down/psicologia
15.
Front Pediatr ; 12: 1382133, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39026941

RESUMO

Introduction: The aim of the study was to summarize and update clinical features and outcomes of multisystem inflammatory syndrome in neonates (MIS-N). Methods: A systematic literature search was conducted of studies on MIS-N published in PubMed, MEDLINE, EMBASE, CNKI, and WHO COVID-19 databases between 1 December 2019 and 30 June 2023. Reference lists of selected articles, Google Scholar, and pre-print servers were searched for additional studies. The methodological quality of included studies was assessed. Results: Of 1,572 records screened after the initial search, 35 studies involving a total of 201 neonates with MIS-N were included. One study was retrieved from a pre-print server. For those with available data, 34/47 (78.7%) mothers were infected in the third trimester. Of the 199 mothers (two with twin pregnancies), 183 (92.0%) were from India. The median age of neonates at presentation was 2.0 days (interquartile range 1.0-9.5). Over two-thirds (144/201, 71.6%) presented with respiratory distress, while 112 (55.7%) had cardiac involvement, such as ventricular dysfunctions, involvement of coronary arteries, and atrioventricular blocks. Arrhythmias and thrombosis were reported in 15/201 (7.5%) and 2/201 (3.0%) neonates, respectively. All neonates, except one, required critical care; 64/160 (40.0%) required inotropic support and 105/187 (56.1%) required respiratory support, of whom 59/105 (56.2%) were specified to require intubation. The mortality rate was 5.0% (10/201). Discussion/Conclusion: MIS-N should be considered in ill neonates presenting with involvement of two or more organ systems, especially among those neonates with cardiorespiratory dysfunctions, in the presence of proven or suspected maternal COVID-19 infection during pregnancy. Systematic Review Registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021278717, PROSPERO, identifier CRD42021278717.

16.
J Clin Epidemiol ; 168: 111286, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38382889

RESUMO

OBJECTIVES: To determine the measurement properties of PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS), a parent-reported measure of Quality of Care for seriously ill children across care settings and illness trajectories. STUDY DESIGN AND SETTING: Parents self-administered baseline and 2-week follow-up surveys online. Exploratory Factor Analysis was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients, and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care and Quality of Children's Palliative Care Instrument. RESULTS: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. Exploratory Factor Analysis grouped PRECIOUS into five scales: collaborative and goal-concordant care (12 items), caregiver support and respectful care (15 items), access to financial and medical resources (five items), reducing caregiving stressors (nine items), and hospitalization-specific processes (four items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. Intraclass correlation coefficients ranged from 0.72 to 0.86. Significant correlations with Measure of Processes of Care and Quality of Children's Palliative Care Instrument confirmed convergent validity. The original 56-item tool was reduced to 45 items. CONCLUSION: PRECIOUS demonstrates satisfactory measurement properties for assessing Quality of Care for seriously ill children.


Assuntos
Pais , Qualidade de Vida , Criança , Humanos , Reprodutibilidade dos Testes , Psicometria , Inquéritos e Questionários , Análise Fatorial
17.
Front Pediatr ; 12: 1336299, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38487471

RESUMO

Objectives: The management of patent ductus arteriosus (PDA) is a critical concern in premature infants, and different hospitals may have varying treatment policies, fluid management strategies, and incubator humidity. The Asian Neonatal Network Collaboration (AsianNeo) collected data on prematurity care details from hospitals across Asian countries. The aim of this study was to provide a survey of the current practices in the management of PDA in premature infants in Asian countries. Methods: AsianNeo performed a cross-sectional international questionnaire survey in 2022 to assess the human and physical resources of hospitals and clinical management of very preterm infants. The survey covered various aspects of hospitals resources and clinical management, and data were collected from 337 hospitals across Asia. The data collected were used to compare hospitals resources and clinical management of preterm infants between areas and economic status. Results: The policy of PDA management for preterm infants varied across Asian countries in AsianNeo. Hospitals in Northeast Asia were more likely to perform PDA ligation (p < 0.001) than hospitals in Southeast Asia. Hospitals in Northeast Asia had stricter fluid restrictions in the first 24 h after birth for infants born at <29 weeks gestation (p < 0.001) and on day 14 after birth for infants born at <29 weeks gestation (p < 0.001) compared to hospitals in Southeast Asia. Hospitals in Northeast Asia also had a more humidified environment for infants born between 24 weeks gestation and 25 weeks gestation in the first 72 h after birth (p < 0.001). A logistic regression model predicted that hospitals were more likely to perform PDA ligation for PDA when the hospitals had a stricter fluid planning on day 14 after birth [Odds ratio (OR) of 1.70, p = 0.048], more incubator humidity settings (<80% vs. 80%-89%, OR of 3.35, p = 0.012 and <80% vs. 90%-100%, OR of 5.31, p < 0.001). Conclusions: In advanced economies and Northeast Asia, neonatologists tend to adopt a more conservative approach towards fluid management, maintain higher incubator humidity settings and inclined to perform surgical ligation for PDA.

18.
Arch Dis Child ; 108(5): 367-372, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36593086

RESUMO

OBJECTIVE: We analysed birth anthropometry of babies of Chinese, Malay and Indian ancestry living in Singapore with an aim to develop gestational age (GA) and gender-specific birth anthropometry charts and compare these with the widely used Fenton charts. DESIGN: Retrospective observational study. SETTING: Department of Neonatology, National University Hospital, Singapore. POPULATION: We report data from 52 220 infants, born between 1991-1997 and 2010-2017 in Singapore. METHODS: Anthropometry charts were built using smoothened centile curves and compared with Fenton's using binomial test. Birth weight (BW), crown-heel length and head circumference (HC) were each modelled with maternal exposures using general additive model. MAIN OUTCOME MEASURES: BW, crown-heel length and HC. RESULTS: There were 22 248 Chinese (43%), 16 006 Malay (31%) and 8543 Indian (16%) babies. Mean BW was 3103 g (95% CI 3096 to 3109), 3075 g (95% CI 3067 to 3083) and 3052 g (95% CI 3041 to 3062) for Chinese, Malays and Indians, respectively. When exposed to a uniform socioeconomic environment, intrauterine growth and birth anthropometry of studied races were almost identical. From our GA-specific anthropometric charts until about late prematurity, Asian growth curves mirrored that of Fenton's; thereafter, Asian babies showed a reduction in growth velocity. CONCLUSIONS: These findings suggest that Asian babies living in relatively uniform socioeconomic strata exhibit similar growth patterns. There is a slowing of growth among Asian babies towards term, prompting review of existing birth anthropometry charts. The proposed charts will increase accuracy of identification of true fetal growth restriction as well as true postnatal growth failure in preterm infants when applied to the appropriate population.


Assuntos
Gráficos de Crescimento , Recém-Nascido Prematuro , Lactente , Feminino , Recém-Nascido , Humanos , Singapura/epidemiologia , Antropometria , Peso ao Nascer , Grupos Raciais , Idade Gestacional
19.
Front Pediatr ; 11: 1167757, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37576138

RESUMO

Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate quality of care. Our objective was to identify the key process indicators prioritized by parents in the care of seriously ill young children and develop a framework to guide assessment of quality of care. Methods: This qualitative study followed Charmaz's Constructivist Grounded Theory. In-depth semi-structured interviews were conducted with parents of young children with serious illness in Singapore. Participants were sampled across various healthcare settings, children's ages, and illness categories. Theoretical sampling and constant comparative analysis were used to generate initial, focused, and theoretical codes, which informed construction of a conceptual framework. Results: 31 parents participated from July 2021 to February 2022. Initial and focused coding generated 64 quality of care indicators describing key care practices, interactions, and procedures. Indicators were categorized under four themes: (1) efficient healthcare structures and standards, (2) professional qualities of healthcare workers, 3. supporting parent-caregivers, and 4. collaborative and holistic care. Theoretical coding led to the development of the "PaRental perspectives on qualIty of care for Children with sErious iLlnESSes (PRICELESS)" framework which summarizes elements contributing to the parental perception of quality of care. Discussion: The identified process indicators will facilitate the development of standardised parent-reported measures for assessing service quality and benchmarking among providers. The framework provides overall guidance for conceiving quality improvement initiatives.

20.
Arch Dis Child Fetal Neonatal Ed ; 108(6): 617-622, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37197908

RESUMO

OBJECTIVE: To synthesise evidence from qualitative studies on the experiences of healthcare personnel (HCP) in the neonatal intensive care unit (NICU) caring for dying neonates. METHODS: We conducted a systematic search, in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO: CRD42021250015), of four databases (PubMed, Embase, PsycINFO and CINAHL) from date of inception of the databases to 31 December 2021 using MeSH terms and related keywords. Data were analysed using three-step inductive thematic synthesis. Quality assessment of included studies was performed. RESULTS: Thirty-two articles were included. There were 775 participants, majority (92.6%) of whom were nurses and doctors. Quality of studies was variable. The narratives of HCP coalesced into three themes: sources of distress, coping methods and the way forward. Sources of distress encompassed HCP's discomfort with neonatal deaths; poor communication among HCP and with patient's family; lack of support (from organisations, peers and HCP's family) and emotional responses (guilt, helplessness and compassion fatigue). Methods of coping included setting emotional boundaries, support from colleagues, clear communication and compassionate care and well-designed end-of-life workflows. Steps taken by HCP to move forward and overcome the emotionally turbulent effects of NICU deaths included finding meaning in death, building deeper relationship with patients' families and the NICU team and embracing purpose and pride in work. CONCLUSION: HCP face several challenges when a death occurs in the NICU. HCP can provide better end-of-life care if their undesirable experiences with death are mitigated by better understanding and overcoming factors causing distress.


Assuntos
Unidades de Terapia Intensiva Neonatal , Assistência Terminal , Recém-Nascido , Humanos , Pessoal de Saúde , Pesquisa Qualitativa , Atenção à Saúde
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