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Long society scientific session
Session Type
Long society scientific session
Room
Hall B
Date
17.10.2020, Saturday
Session Time
09:00 - 10:40
Session Description
Pre recorded + Live Q&A

Ethical principles in pediatric practice and research

Session Type
Long society scientific session
Date
17.10.2020, Saturday
Session Time
09:00 - 10:40
Room
Hall B
Lecture Time
09:00 - 09:20

Abstract

Abstract Body

Practice: The work of pediatrician is guided by four ethical principles(EP): (1) Beneficence: Benefit the sick; (2) Nonmaleficence: “Do no harm”;(3) Autonomy: Rights of patients; (4) Justice. In 2012 a German court held that circumcision constitutes criminal assault and injures the integrity of the infant of a Muslim family. The case led to discussions about the balance of freedom of religion versus the child’s integrity. In 2012 the AAP task force on circumcision made recommendations: The benefits of newborn male circumcision justify access to this procedure for those families who choose it. In Germany the discussions led to a new law which declares the MC is allowed. More dilemmas are faced by pediatricians dealing with conditions like the need of blood transfusions during the treatment of cancer or after severe traumas as well as in pediatric neurology, cardiology and intensive care medicine, where a life prolonging treatment can be questionable or even impossible.

Research: In Research of children the same EP apply. In addition distributive justice (DJ) plays a role, where benefits and burdens must be evenly distributed throughout the society. As research in children cannot be done in other persons, it is acceptable according to (DJ), even if the research is not in the interest of the child itself. Improvements in treatment and care cannot be made without research in children. Contribution to function of a society involves subordinating one ‘s interest to the general interest. Thus, it seems reasonable to ask children to participate in medical research.

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Economics meets medicine - common ethical dilemmas

Session Type
Long society scientific session
Date
17.10.2020, Saturday
Session Time
09:00 - 10:40
Room
Hall B
Lecture Time
09:20 - 09:40

GILBERT SYNDROME OR HEREDITARY SPHEROCYTOSIS: A CLINICAL REPORT

Session Type
Long society scientific session
Date
17.10.2020, Saturday
Session Time
09:00 - 10:40
Room
Hall B
Lecture Time
09:40 - 09:50

Abstract

Abstract Body

Background. Hereditary spherocytosis (HS) is a common congenital hemolytic anemia in northern Europe. Gilbert syndrome (GS) may occasionally be mistaken for HS in the presence of unconjugated hyperbilirubinemia without anemia.

Clinical report. A 15-year-old boy presented with mild scleral icterus and splenomegaly. LFTs were normal except elevated bilirubin (total/direct 38.6/5.0 μmol/L). There was no anemia therefore GS was diagnosed. One year later, the patient presented to hematologist due to persistent splenomegaly. Hb, MCV, MCH were normal (141 g/l, 81.7 fl, 30.7 pg, respectively). MCHC, RDW and reticulocyte count were increased (376 g/l, 46.9 fl, 2.76 %, respectively). A blood smear detected 8 % spherocytes. LFTs revealed raised LDH (306 U/L) and bilirubin (total/direct 61.7/6.63 μmol/L). Further investigations showed decreased haptoglobin (<0.08 g/l) and folic acid (7.99 nmol/l), increased ferritin (173.3 mkg/l). Hb electrophoresis was normal. DAT was negative. US showed splenomegaly (166 mm). Based on the results, non-immune hemolysis was identified therefore HS was suspected. Next generation sequencing of SPTA1, SPTB, EPB42, SLC4A1, ANK1, PKLR and UGT1A1 genes revealed a heterozygous c.1280T>A variant of uncertain significance in SLC4A1 gene (NM_000342.3). Segregation analysis showed a heterozygous c.1280T>A variant in SLC4A1 gene in a suspected mosaic state in patient’s father, who had elevated bilirubin for about 10 years.

Conclusions. Both GS and HS present with unconjugated hyperbilirubinemia. HS may present without anemia if hemolysis is mild or well compensated, therefore may be mistaken for GS. The existance of splenomegaly, reticulocytosis and MCHC elevation, may be very useful for differentiating both conditions.

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THE PHYSICAL HEALTH OF MOTHERS OF CHILDREN WITH A LIFE-LIMITING CONDITION; A COMPARATIVE COHORT STUDY

Session Type
Long society scientific session
Date
17.10.2020, Saturday
Session Time
09:00 - 10:40
Room
Hall B
Lecture Time
09:50 - 10:00

Abstract

Abstract Body

Background and aims

There are growing numbers of children with a life-limiting condition (LLC) in the UK. Mothers of these children often become a healthcare provider as well as a parent. Little is known about the effect on the mother’s physical health so this study aimed to quantify the incidence of maternal physical health morbidity.


Methods

A comparative cohort study using linked primary and secondary care data included three groups of children and their mothers (those with a LLC, those with a chronic condition and those with no long term health condition). Outcomes were identified using diagnostic codes in these datasets and incidence rates and incidence rate ratios were used to quantify and compare the outcomes between groups.


Results

35,699 mothers; 8950 whose child had a LLC, 8868 whose child had a chronic condition and 17865 whose child had no long term condition.

The adjusted IRR are shown:

obesity were 1.30 (95%cI 1.19,1.44) LLC, 1.12 (95%CI 1.02,1.23) chronic with ‘heathy group as reference.

hypertension were 1.36 (95%CI 1.21,1.53) LLC, 1.22 (95%CI 1.09,1.37) chronic with ‘heathy group as reference.

Cardiovascular disease were 1.86 (95%CI 1.37,2.53) LLC, 1.27 (95%CI 0.91,1.76) chronic with ‘heathy group as reference.

Type 2 diabetes were 1.28 (95%CI 1.05,1.56) LLC, 1.12 (95%CI 0.93,1.36) chronic with ‘heathy group as reference.


Conclusions

The incidence of chronic health conditions which are likely to affect morbidity and mortality in this population were higher in the mothers of those with a life-limiting condition compared to those of healthy children.

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THE CHALLENGES OF COVID-19 PANDEMIC FOR PATIENTS WITH ATTENTION-DEFICIT HYPERACTIVITY DISORDER

Session Type
Long society scientific session
Date
17.10.2020, Saturday
Session Time
09:00 - 10:40
Room
Hall B
Lecture Time
10:00 - 10:10

Abstract

Abstract Body

Background: The COVID-19 pandemic has brought unprecedented challenges for millions around the world. Individuals with neurodevelopmental disorders, such as attention-deficit hyperactivity disorder (ADHD), and their families are particularly susceptible to the distress caused by the pandemic and its physical distancing measures.

Objective: To evaluate the effects caused by the pandemic and its confinement in children and adolescents with ADHD.

Methods: Retrospective study of ADHD patients with medical appointments in a level II hospital between March and May 2020. Data analysis was performed using SPSS®.

Results: We included 143 patients (72% males). The median age was 11 years (minimum of 6; maximum of 17). Among the most frequent comorbidities, 62% had global learning difficulties and 8% had specific learning difficulties. Regarding pharmacological treatment, 93% were receiving psychostimulants (methylphenidate or lisdexamfetamine). Out of 34% that stopped the medication during the confinement 6% were described as better, 28% exhibited aggravated behavioral problems or worst performance at school and 66% were stable without major complaints. Out of 66% that kept medical treatment as previously prescribed, 18.5% showed global improvement, 68.5% were described by parents as similar as the normal status before the pandemic, while 13% exhibited aggravated behavioral or attention/concentration problems.

Conclusion: Despite the extensive changes in regular routine caused by the pandemic, such as home confinement and remote learning by videoconference, most of our patients with ADHD did not show worsened status in terms of behavior, attention/concentration or school performance comparing to the times before the pandemic.

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PERCEPTION AND WILLINGNESS TO MAINTAIN CONTINUITY OF CARE BY PARENTS OF CHILDREN WITH ASTHMA

Session Type
Long society scientific session
Date
17.10.2020, Saturday
Session Time
09:00 - 10:40
Room
Hall B
Lecture Time
10:10 - 10:20
Presenter

Abstract

Abstract Body

Background and aims: To investigate main caregivers’ or parents’ attitude toward continuity of care (COC) and their willingness to maintain such continuity for their children with asthma under a national health insurance (NHI) system without a strict referral management.

Methods: A cross-sectional survey was conducted from August 2017 to February 2018 in Taiwan. We sampled 825 individuals from six pediatric outpatient departments in different sites in Taiwan. Post-stratification weighting adjustment and coarsened exact matching were utilized. Multivariate logistic regression was used to compare the willingness to pay and willingness to spend extra time maintaining continuity for parents of children with and without asthma.

Results: More than 80% of respondents in the asthma group believed that having a primary pediatrician was important for their children’s health. However, only 21.9% and 18.1% of respondents in the asthma and control groups, respectively, believed that changing the pediatrician would negatively affect therapeutic outcomes. Ordinal logistic regression analysis results demonstrated a significant positive dose-response relationship between household income and willingness to pay for maintaining health care provider continuity.

Conclusions: Despite the NHI eliminating direct costs of medical care, household income remains a significant determinant of willingness to maintain provider continuity. Parents’ and caregivers’ free choices among health care providers may reduce willingness to spend extra effort maintaining high COC. Parents and main caregivers should be educated on the importance of provider care continuity.

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