<b><i>Introduction:</i></b> Approximately, one in ten infants is born preterm or requires hospitalization at birth. These complications at birth have long-term consequences that can extend into childhood and adulthood. Timely detection of developmental delay through surveillance could enable tailored support for these babies and their families. However, the possibilities for follow-up are limited, especially in middle- and low-income countries, and the tools to do so are either not available or too expensive. A standardized and core set of outcomes for neonates, with feasible tools for evaluation and follow-up, could result in improving quality, enhance shared decision-making, and enable global benchmarking. <b><i>Methods:</i></b> The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group, which was comprised of 14 health-care professionals (HCP) and 6 patient representatives in the field of neonatal care. An outcome set was developed using a three-round modified Delphi process, and it was endorsed through a patient representative-validation survey and an HCP survey. <b><i>Results:</i></b> A literature review revealed 1,076 articles and 26 registries which were screened for meaningful outcomes, patient-reported outcome measures, clinical measures, and case mix variables. This resulted in a neonatal set with 21 core outcomes covering three domains (physical, social, and mental functioning) and 14 tools to assess these outcomes at three timepoints. <b><i>Discussion:</i></b> This set can be implemented globally and it will allow comparison of outcomes across different settings and countries. The transparent consensus-driven development process which involved stakeholders and professionals from all over the world ensures global relevance.
Background Globally, mental health disorders and behavioural problems afflict persons with Down syndrome (DS) with a high prevalence reported in some studies. However, data on behavioural and emotional disorders in DS cohort in Asian countries are lacking. Aims To assess the mental health status of children and adults with DS, using the Strength and Difficulties Questionnaire (SDQ) and its impact on caregivers using the impact supplement. Methods The questionnaires were administered to caregivers of eligible participants aged ≥4 years. In addition, Down syndrome participant's ≥ 11 years old attempted the self-report. Scoring was done as per standard SDQ guidelines. Results The total difficulties score was observed to be at least borderline high in 30.6% (19/62) of the participants. Peer relationships and conduct subscale issues were rated high, with abnormal internalizing scores predominating over externalizing scores. From parents' perspective, behavioural issues impacted 41.9% (26/62) of participants' in areas of education, peer relationship and leisure. However, only 3.8% (1/26) of the caregivers whose children had behavioural issues perceived them as a burden. Conclusions Mental health difficulties are a significant morbidity in our DS cohort. SDQ is a useful user-friendly tool for identification of behavioural problems enabling timely referral for intervention and therapy.
<b><i>Introduction:</i></b> Glucose 6-phosphate dehydrogenase (G6PD) deficiency increases the risk of severe neonatal hyperbilirubinemia. This study evaluates the risk factors predicting the need for phototherapy in G6PD-deficient neonates after 72 h of age and assesses the safety of early discharge. <b><i>Methods:</i></b> A retrospective cohort study of 681 full-term G6PD-deficient infants with a birth weight ≥2,500 g over 4 years was conducted. We compared the baseline characteristics, bilirubin level on day 4 (after 72 h of life), day of peak bilirubin, G6PD levels, and concomitant ABO incompatibility between the group that required phototherapy (Group A) and those who did not (Group B). <b><i>Results:</i></b> 396 infants (58%), predominantly males, required phototherapy in the first week of life. The infants who required phototherapy had a lower median gestational age (38.3 vs. 38.7 weeks, <i>p</i> < 0.01) and had lower G6PD levels (2.3 ± 2.5 vs. 3 ± 3.4 IU, <i>p</i> < 0.05) compared to the controls. The mean day-four total serum bilirubin (TSB) levels were higher (213 ± 32 vs. 151 ± 37 µmol/L, <i>p</i> < 0.01), with bilirubin level peaking earlier (3 vs. 4 days of life, <i>p</i> < 0.01) in group A. Regression analysis identified TSB levels on day 4, Chinese race, lower gestation, and concomitant ABO incompatibility as the significant predictors for the need for phototherapy in the study population. In particular, coexisting ABO blood group incompatibility increased the risk of jaundice requiring phototherapy (OR 4.27, 95% CI: 1.98–121, <i>p</i> < 0.01). Day four TSB values above 180 µmol/L predicted the need for phototherapy with 86% sensitivity and 80% specificity. The findings were similar across both male and female infants with G6PD deficiency. <b><i>Conclusion:</i></b> G6PD-deficient infants with day four TSB levels of >180 µmol/L (10.5 mg/dL) and associated ABO blood group incompatibility have a higher risk of requiring phototherapy in the first week of life and should be closely monitored.
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