BMJ Paediatrics Open最新文献

Objective: We investigated sudden unexpected death in infancy (SUDI) autopsy data from 1996 to 2015 inclusive, comparing findings from infants with and without pre-existing medical conditions.

Design: Large, retrospective single-centre autopsy series.

Setting: Tertiary paediatric hospital, London, UK.

Methods: Non-identifiable autopsy findings were extracted from an existing research database for infants older than 7 days up to and including 365 days old who died suddenly and unexpectedly (SUDI; n=1739). Cases were classified into SUDI with pre-existing condition (SUDI-PEC) (n=233) versus SUDI without PEC (SUDI non-PEC) (n=929), where PEC indicates a potentially life-limiting pre-existing medical condition. Findings were compared between groups including evaluation of type of PEC and whether the deaths were medically explained (infectious or non-infectious) or apparently unexplained.

Results: Median age of death was greater in SUDI-PEC compared with SUDI non-PEC (129 days vs 67 days) with similar male to female ratio (1.4:1). A greater proportion of deaths were classified as medically explained in SUDI-PEC versus SUDI non-PEC (73% vs 30%). Of the explained SUDI, a greater proportion of deaths were non-infectious for SUDI-PEC than SUDI non-PEC (66% vs 32%). SUDI-PEC (infectious) infants were most likely to have respiratory infection (64%), with susceptible PEC, including neurological, prematurity with a PEC, and syndromes or other anomalies.

Conclusion: SUDI-PEC deaths occur later in infancy and are likely to have their death attributed to their PEC, even in the absence of specific positive autopsy findings. Future research should aim to further define this cohort to help inform SUDI postmortem guidelines, paediatric clinical practice to reduce infant death, and to reduce the risk of overattribution of deaths in the context of a PEC.

Objective: To understand parental perspectives regarding universal newborn screening (UNS) for congenital cytomegalovirus (cCMV) in Canada.

Design: A qualitative, patient-led study using the Patient and Community Engagement Research approach consisting of online focus groups and in-depth individual interviews to understand parental preferences regarding UNS for cCMV. Data were analysed iteratively using inductive thematic analysis and narrative story analysis.

Setting: Canada-wide study conducted via video conference from October to December 2023.

Patients: 12 participants from five Canadian provinces who self-identified as 18 years of age or older and as having parental lived experience with cytomegalovirus (CMV) or cCMV participated in the study.

Results: We identified three themes: (1) attitudes about UNS for cCMV, including participants' unanimous support for UNS and confirmation that parental anxiety is not a deterrent for screening, (2) cCMV diagnosis, including the importance of coupling cCMV diagnosis with access to treatment and medical support and (3) awareness of cCMV, where participants shared their frustration about the lack of public and pregnant people's awareness of cCMV.

Conclusions: Parental anxiety is not a deterrent for UNS for cCMV. Children with cCMV and their families deserve every opportunity to attain their best possible outcomes. UNS offers children with cCMV access to early intervention if they need it, and also helps to raise awareness and education to prevent future CMV infections.

Background: Benefits of different types of family-centred care (FCC) interventions in neonatal intensive care units (NICUs) have been reported. However, a comprehensive review of existing FCC intervention studies was lacking.

Objective: This review aimed at synthesising the characteristics of FCC interventions, related outcomes and measurement methods in randomised controlled trials (RCTs) in NICU, and providing menus of options to favour implementation and further research.

Methods: We searched PubMed, EMBASE, Web of Science and the Cochrane Library up to 31 January 2022. Interventions were mapped according to five categories as defined by a previous Cochrane review. We described outcome types, measurement populations, measurement methods and timelines. Subgroup analyses were also performed.

Results: Out of 6583 studies identified, 146 met eligibility criteria. Overall, 52 (35.6%) RCTs tested more than one category of intervention, with a large variety of combinations, with the most frequent category of intervention being the educational (138 RCTs, 94.5%). We identified a total of 77 different intervention packages, and RCTs comparing the same interventions were lacking. The 146 RCTs reported on 425 different outcomes, classified in 13 major categories with parental mental health (61 RCTs, 41.8% of total RCTs) being the most frequent category in parents, and neurobehavioural/developmental outcomes being the most frequent category in newborns (62 RCTs, 42.5%). For several categories of outcomes almost every RCT used a different measurement method. Educational interventions targeting specifically staff, fathers, siblings and other family members were lacking or poorly described. Only one RCT measured outcomes in health workers, two in siblings and none considered other family members.

Conclusions: A large variety of interventions, outcomes and measurement methods were used in FCC studies in NICU. The derived menus of options should be helpful for researchers and policy makers to identify interventions most suitable in each setting and to further standardise research methods.

Background: Studies comparing the frequency of different mental health conditions across different settings and evaluating their association with parental participation in newborn care are lacking. We aimed at evaluating the frequency of parental stress, anxiety and depression, along with the level of participation in newborn care, among parents of newborns in Italy, Brazil and Tanzania.

Methods: Parental stress, anxiety, depression and participation in care were assessed prospectively in parents of newborns in eight neonatal intensive care units (NICUs) utilising: the Parental Stressor Scale in NICU (PSS:NICU); the Edinburgh Postnatal Depression Scale (EPDS) and EPDS-Anxiety subscale (EPDS-A); the Index of Parental Participation in NICU (IPP-NICU). Univariate and multivariate analyses were conducted.

Results: Study outcomes were assessed on 742 parents (Brazil=327, Italy=191, Tanzania=224). Observed scores suggested a very high frequency of stress, anxiety and depression, with an overall estimated frequency of any of the mental health condition of 65.1%, 52.9% and 58.0% in Brazil, Italy, Tanzania, respectively (p<0.001). EPDS scores indicating depression (cut-off: ≥13 for Brazil and Tanzania, ≥12 for Italy) were significantly more frequent in Tanzania (52.3%) when compared with either Brazil (35.8%) and Italy (33.3%) (p<0.001). Parental participation in care was also significantly higher in Tanzania (median IPP-NICU=24) than in the other two countries (median=21 for Brazil, 18 for Italy, p<0.001). Severe stress (PSS:NICU ≥4) was significantly more frequently reported in Brazil (22.6%), compared with Italy (4.7%) and Tanzania (0%, p<0.001). Factors independently associated with either parental stress, anxiety or depression varied by country, and a significant association with parental participation in care was lacking.

Conclusions: Study findings suggest that parental stress, anxiety and depression are extremely frequent in NICUs in all countries despite diversity in the setting, and requiring immediate action. Further studies should explore the appropriate level of parental participation in care in different settings.

Background: Different definitions of family-centred care (FCC) exist in the newborn setting, and many FCC interventions have been tested, while a comprehensive review synthesising characteristics of existing intervention studies is still lacking.

Objective: This review aims at summarising the characteristics of randomised controlled trials (RCTs) on FCC interventions in neonatal intensive care units.

Methods: We searched PubMed, Embase, Web of Science and the Cochrane Library up to 31 January 2022, and reference lists of included studies and other reviews. Interventions were grouped into five categories according to a previous Cochrane review: (1) family support, (2) educational, (3) communication, (4) environmental interventions and (5) family-centred policies. Subgroup analyses by time period (RCTs published before vs after 2016) and by country income (based on the World Bank Classification) were conducted.

Results: Out of 6583 retrieved studies, 146 RCTs met the eligibility criteria, with 53 (36.3%) RCTs published after 2016. Overall, 118 (80.8%) RCTs were conducted in high-income countries, 28 (19.1%) in middle-income countries and none in low-income countries. Only two RCTs were multicountry. Although mothers were the most frequent caregiver involved, fathers were included in 41 RCTs (28.1%). Very few studies were conducted in at-term babies (nine RCTs); siblings (two RCTs) and other family members (two RCTs), maternity care units (two RCTs). The role of health professionals was unclear in 65 (44.5%) RCTs. A large variety of intervention combinations was tested, with 52 (35.6%) RCTs testing more than 1 category of interventions, and 24 (16.4%) RCTs including all 5 categories.

Conclusion: There is a large and rising number of RCTs on FCC interventions in neonatal intensive care units, with specific research gaps. The large variety of FCC interventions, their high complexity, the need to tailor them to the local context and major gaps in implementation suggest that implementation research is the current priority.

Introduction: There is little published information on type 1 diabetes (T1D) in children in Yemen. We aimed to identify the clinical characteristics, biomarkers and diabetic ketoacidosis (DKA) at diagnosis of T1D among children and adolescents in a diabetes centre in Sana'a, Yemen.

Methods: A total of 485 children and adolescents aged ≤18 years diagnosed with T1D during the period 2010-2020 were included in the study. The variables investigated were demographic and clinical characteristics, biomarkers, subtypes of T1D, and the risk factors for severe DKA at diagnosis.

Results: At diagnosis, children aged <10 years compared with those aged ≥10 years had higher mean plasma glucose (p<0.001) and mean HbA1c (p=0.026), and lower mean C-peptide (pmol/L) (p=0.019), and a higher frequency of DKA at diagnosis than older children (p<0.001). A majority of the study population (383, 79%) presented in DKA . Children aged <10 years presenting with DKA had significantly longer median appraisal interval (p=0.009) and median total diagnosis interval (p=0.025), and significantly lower mean C-peptide (p=0.001) as compared with their peers without DKA. The prevalence of autoantibody-negative 'idiopathic' T1D was 36 (32%) of the total number tested for autoantibody and familial T1D 61 (12.6%) of all the study population.

Conclusion: In Yemen children aged <10 years with new-onset T1D frequently faced the challenge of a delay in diagnosis and treatment initiation, with severe hyperglycaemia and a higher risk of DKA at diagnosis.

Background: Regular blood tests for monitoring metabolic side effects are often unable to be collected for people with an intellectual/developmental disability (ID/DD) and challenging behaviours (CBs) using usual pathways. We aimed to develop a model of care to facilitate venipuncture for children and young adults with ID/DD and CBs.

Methods: A systematic tiered model of care was developed for venipuncture to suit the individual needs of children and young adults with ID/DD and CBs. A partnership was formed by the disability health team with a community pathology service provider. An observational retrospective study of the baseline demographic data, severity of disability and diagnosis, oral sedation requirement, and outcome data on the success/failure of venipuncture was done.

Results: 14 children (mean (SD), 12.8 (3.1) years) had 17 attempted venipuncture with 'reasonable adjustments' such as preparation with social stories, distraction, low sensory strategies and oral sedation at school clinics. 14 (82%) attempts were successful. After the success of the pilot programme at school, venipuncture was replicated in settings such as home, day programmes, pathology centres and a respite facility. 16 people with ID/DD and CBs (mean (SD)17.3 (3.7) years), had 14 successful venipuncture performed out of 18 attempts (success rate, 77.7%). Overall, 11 attempts (31.4%) succeeded without requiring oral sedation using only reasonable adjustments. 16 attempts (45.7%) succeeded with conscious oral sedation along with reasonable adjustments. Of those 16, 10 required olanzapine (5 mg), 1 required olanzapine (10 mg), 1 required combination of risperidone (1 mg) and diazepam (5 mg), 1 required clonazepam (2.5 mg) and olanzapine (5 mg), 1 required combination of olanzapine (10 mg) and diazepam (10 mg), 1 required combination of olanzapine (10 mg) and diazepam (5 mg) while 1 required only diazepam (5 mg). One had to be switched to the tier-3 pathway.

Conclusion: A model of care was developed to ensure compassionate and non-stressful venipuncture for children and young adults with disabilities. We demonstrated that a significant proportion of carefully selected children and young adults with ID/DD and CBs, considered 'challenging for blood collection' can have venipuncture performed successfully in non-hospital settings using 'reasonable adjustments' and oral sedation.

Introduction: Irrational prescribing and dispensing of oral dosage forms of medicines to paediatric patients are major public health issues, especially in low-income and middle-income countries. Many challenges affect the rational use of oral dosage forms of medicines in children; these include a lack of dosage forms appropriate for the age and a lack of dose flexibility in dosage forms.

Objectives: To assess the rational prescribing and dispensing practices of oral dosage forms to children at dispensaries of the University of Gondar Comprehensive and Specialised Hospital (UoGCSH).

Method: A retrospective design for prescribing indicators and a cross-sectional study design to assess rational dispensing were used at the outpatient dispensary units of UoGCSH. A total of 931 oral dosage forms to assess prescribing indicators and 400 for dispensing indicators were used. The data were analysed using the Statistical Package for Social Sciences (SPSS V.26.0, IBM Corporation). Descriptive statistics were used to analyse indicators, and the χ² test was used to compare indicators between dispensaries.

Result: Out of a total of 931 oral dosage forms for 700 prescriptions, 56.3% were solid oral dosage forms. An average number of oral dosage forms per child was 1.33±0.62. Only 150 (16.13%) (95% CI: 14% to 18.4%) were adequate for the weight of the child. The percentage of oral dosage forms not suitable for the age was 7.1% (66), (95% CI: 5.6% to 8.8%), and about 0.8% (95% CI: 0% to 1.8%) were adequately labelled. Drugs that needed manipulation before administering a single unit were 81 (39.7%), 95% CI: 33.7% to 47.1%.

Conclusion: The proportion of the prescribed medications that were adequate for the weight of the child was low, although the majority of prescriptions' weights were not recorded. Oral dosage forms not suitable for children were prescribed. The proportion of medications that needed manipulation before being administered as a single unit was high.