Vulnerable child syndrome in everyday paediatric practice: A condition deserving attention and new perspectives

Verbeek, Inge; Onzenoort-Bokken, Lonneke van; Zegers, Sebastiaan Hermanus Johannes

doi:10.1111/apa.15505

Cited by 6 publications

(4 citation statements)

References 8 publications

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“…26 Hospitalizations are associated with iatrogenic complications for the patients, disruption of breastfeeding, development of the vulnerable child syndrome, financial difficulties for the family and overall increase in the cost of care. 20,[27][28][29][30][31][32] Overdiagnosis, medical overuse and the possible consequences of medical interventions have only recently attracted attention. 33 Thus, it is important to carefully balance the risk of missing an IBI against the side effects of excessive investigations and antibiotic treatments on the infants and better resource utilization.…”

Section: Discussionmentioning

confidence: 99%

Management and Outcome of Febrile Infants ≤60 days, With Emphasis on Infants ≤21 Days Old, in Swedish Pediatric Emergency Departments

Orfanos

Elfving

Fernandez

et al. 2022

Pediatric Infectious Disease Journal

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Background: Management of febrile infants ≤60 days of age varies, and the age for routine investigations and antibiotic-treatment is debated. The American Academy of Pediatrics recommended age threshold for lumbar puncture (LP) is 21 days and for blood culture 60 days. We describe management and adverse outcome of febrile infants ≤60 days old, in Sweden. Methods: Retrospective cross-sectional study of infants ≤60 days of age with fever without source evaluated in 4 University pediatric emergency departments, between 2014 and 2017. Adverse outcome was defined as delayed-treated invasive bacterial infection (IBI: meningitis or bacteremia). Results: We included 1701 infants. In infants ≤21 days old, LP was performed in 16% (95% CI: 12–20) and blood culture in 43% (95% CI: 38–48). Meningitis was diagnosed in 5 (1.3%; 95% CI: 0.4–3.0) and bacteremia in 12 (4.5%; 95% CI: 2.6–7.0) infants. Broad-spectrum antibiotics were not administered to 66% (95% CI: 61–71), of which 2 (0.8%; 95% CI: 0.1–2.8) diagnosed with IBI (1 meningitis and 1 bacteremia). In the 29–60 days age group, blood culture was performed in 21% (95% CI: 19–24), and broad-spectrum antibiotics were not administered to 84% (95% CI: 82–86), with no case of delayed-treated bacteremia. Conclusions: The rates of LP, blood culture and broad-spectrum antibiotics were low. Despite that, there were few delayed-treated IBIs, but 2 of the 17 infants ≤21 days of age with IBI were not timely treated, which prompts the need for a safer approach for this age group. Also, the utility of routine blood culture for all febrile infants 29–60 days old could be questioned.

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Section: Discussionmentioning

confidence: 99%

Management and Outcome of Febrile Infants ≤60 days, With Emphasis on Infants ≤21 Days Old, in Swedish Pediatric Emergency Departments

Orfanos

Elfving

Fernandez

et al. 2022

Pediatric Infectious Disease Journal

View full text Add to dashboard Cite

show abstract

“…This position proposes that an awareness of a child’s Huntington’s disease status could result in psychosocial harms or impaired familial relationships: the child or parent(s) might become anxious or distressed knowing that the child is at risk of developing an AOC 12 13. This could manifest in poor self-esteem in childhood, possible harm to the parent–child relationship or the ‘vulnerable child phenomenon’, whereby parents treat their child with overprotectiveness and extreme concern due to the child being ‘at risk’ 7 14 15. Introducing CAM for NIPT for Huntington’s disease would theoretically prevent this predicament.…”

Section: The Conditional Access Modelmentioning

confidence: 99%

Unconditional access to non-invasive prenatal testing (NIPT) for adult-onset conditions: a defence

2023

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Over the past decade, non-invasive prenatal testing (NIPT) has been adopted into routine obstetric care to screen for fetal sex, trisomies 21, 18 and 13, sex chromosome aneuploidies and fetal sex determination. It is predicted that the scope of NIPT will be expanded in the future, including screening for adult-onset conditions (AOCs). Some ethicists have proposed that using NIPT to detect severe autosomal AOCs that cannot be prevented or treated, such as Huntington’s disease, should only be offered to prospective parents who intend to terminate a pregnancy in the case of a positive result. We refer to this as the ‘conditional access model’ (CAM) for NIPT. We argue against CAM for NIPT to screen for Huntington’s disease or any other AOC. Next, we present results from a study we conducted in Australia that explored NIPT users’ attitudes regarding CAM in the context of NIPT for AOCs. We found that, despite overall support for NIPT for AOCs, most participants were not in favour of CAM for both preventable and non-preventable AOCs. Our findings are discussed in relation to our initial theoretical ethical theory and with other comparable empirical studies. We conclude that an ‘unconditional access model’ (UAM), which provides unrestricted access to NIPT for AOCs, is a morally preferable alternative that avoids both CAM’s fundamental practical limitations and the limitations it places on parents’ reproductive autonomy.

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“…The benefits of disclosing the diagnosis of an adult-onset disorder to the parents of pediatric patients have included enabling parents to prepare for the future, make informed decisions about the health of their child and diminish potential psychological harms associated with not reporting known genetic information [65][66][67][68]. Potential harms often mirror the arguments of potential benefits, with the exception that predictive testing violates a child's autonomy (as an adult-onset disorder can never be imminent) [69,70] and increasing parental anxiety due to the 'vulnerable child' syndrome [71,72]. These universal arguments are echoed in the smaller LSD community, with benefits such as decreased time to diagnosis and prevention of morbidity, versus the potential economic and psychological harms [73][74][75][76].…”

Section: Mixed Gd Phenotypes Present Challenges In Interpreting Nbs R...mentioning

confidence: 99%

Newborn Screening in Gaucher Disease: A Bright and Complicated Future

Sidransky¹,

Jong²,

Ryan³

2022

OBM Genet

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Gaucher disease (GD) is one of the most common lysosomal storage disorders resulting from biallelic mutations in the <em>GBA1 </em>gene, causing a dysfunction of the lysosomal hydrolase, glucocerebrosidase (acid-β-glucosidase; E.C 3.2.1.45). Clinical manifestations are heterogenous and can include splenomegaly, anemia, and neurological impairments in the case of neuronopathic Gaucher disease types 2 and 3. Newborn screening, arguably the most important public health initiative to date, has been regularly conducted on newborns in the United States since the 1960s. The development of new low-cost screening methods and effective treatments are motivating the inclusion of GD and other lysosomal storage disorders in population-wide newborn screens. In this article, we review the history of newborn screening for GD, the screening methods used, and ethical considerations and challenges regarding the successful implementation of population-based newborn screening for GD.

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Vulnerable child syndrome in everyday paediatric practice: A condition deserving attention and new perspectives

Cited by 6 publications

References 8 publications

Management and Outcome of Febrile Infants ≤60 days, With Emphasis on Infants ≤21 Days Old, in Swedish Pediatric Emergency Departments

Management and Outcome of Febrile Infants ≤60 days, With Emphasis on Infants ≤21 Days Old, in Swedish Pediatric Emergency Departments

Unconditional access to non-invasive prenatal testing (NIPT) for adult-onset conditions: a defence

Newborn Screening in Gaucher Disease: A Bright and Complicated Future

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