Pediatric Epidemiology

166 Pages·2018·1.588 MB·English

by  Wieland Kiess (editor), Chris Gennings (editor), Carl-Gustaf Bornehag (editor)

Pediatric and Adolescent Medicine
Editor: W. Kiess
Vol. 21
Pediatric
Epidemiology
Editors
W. Kiess
C.-G. Bornehag
C. Gennings
Pediatric Epidemiology
Pediatric and Adolescent Medicine
Vol. 21
Series Editor
Wieland Kiess
Leipzig
Pediatric Epidemiology
Volume Editors
Wieland Kiess
Leipzig
Carl-Gustaf Bornehag
Karlstad
Chris Gennings
New York, NY
21 figures, 7 in color, and 23 tables, 2018
Basel · Freiburg · Paris · London · New York · Chennai · New Delhi ·
Bangkok · Beijing · Shanghai · Tokyo · Kuala Lumpur · Singapore · Sydney
Pediatric and Adolescent Medicine
Founded 1999 by Martin O. Savage, London
Wieland Kiess Carl-Gustaf Bornehag
Hospital for Children and Adolescents Department of Health Sciences
Department of Women and Child Health Karlstad University
University Hospitals SE–651 88 Karlstad (Sweden)
University of Leipzig
Liebigstraße 20a
DE–04103 Leipzig (Germany)
Chris Gennings
Department of Environmental Medicine and
Public Health
17 E 102 St, Floor 3, Room D3-134
New York, NY 10029 (USA)
Library of Congress Cataloging-in-Publication Data
Names: Kiess, W. (Wieland), editor. | Bornehag, Carl-Gustaf, editor. |
Gennings, Chris, editor.
Title: Pediatric epidemiology / volume editors, Wieland Kiess, Carl-Gustaf
Bornehag, Chris Gennings.
Other titles: Pediatric and adolescent medicine ; v. 21. 1017-5989
Description: Basel ; New York : Karger, 2018. | Series: Pediatric and
adolescent medicine, ISSN 1017-5989 ; vol. 21 | Includes bibliographical
references and index.
Identifiers: LCCN 2017049678| ISBN 9783318061222 (hard cover : alk. paper) |
ISBN 9783318061239 (electronic version)
Subjects: | MESH: Epidemiologic Methods | Child Health
Classification: LCC RJ106 | NLM WA 950 | DDC 614.4083--dc23 LC record available
at https://lccn.loc.gov/2017049678
Bibliographic Indices. This publication is listed in bibliographic services, including Current Contents® and Index Medicus.
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© Copyright 2018 by S. Karger AG, P.O. Box, CH–4009 Basel (Switzerland)
www.karger.com
Printed on acid-free and non-aging paper (ISO 9706)
ISSN 1017–5989
e-ISSN 1662–3886
ISBN 978–3–318–06122–2
e-ISBN 978–3–318–06123–9
Contents
VII Introduction
Kiess, W. (Leipzig); Bornehag, C.-G. (Karlstad); Gennings, C. (New York, NY)
1 Ethical Issues in Paediatric Epidemiology
Rotzoll, M.; Willer, M. (Halle-Wittenberg)
16 Epidemiological Studies of Child Maltreatment: Difficulties and Possibilities
Janson, S. (Karlstad)
30 Legislation on Genetic Testing in Different Countries
Rössler, F.; Lemke, J.R. (Leipzig)
41 The Dilemma Associated with Incidental Findings
Hiemisch, A.; Kiess, W. (Leipzig)
60 Challenges and Opportunities in Conducting Research in Developing Countries
Khan, M.I.; Memon, Z.A.; Bhutta, Z.A. (Karachi)
71 How to Recruit a Representative Sample and How to Look for It?
Hoffmann, R.; Gösswald, A.; Houben, R.; Lange, M.; Kurth, B.-M. (Berlin)
85 The Epidemiology of Global Child Health
Persson, L.Å. (London)
97 How to Deal with Proxy-Reports
Genuneit, J. (Ulm)
105 Biology at a Young Age Differs from Biology at Later Ages: Developmental
Aspects of Growth and Body Functions in Children and Young Adults
Söder, O. (Stockholm)
113 Basic Epidemiology, Statistics, and Epidemiology Tools and Methods
Vogel, M.; Poulain, T.; Jurkutat, A.; Spielau, U.; Kiess, W. (Leipzig)
143 How to Deal with Confounding
Genuneit, J. (Ulm)
152 Author Index
153 Subject Index
V

Introduction
Paediatric epidemiology deals with issues related to children’s and adolescents’ health,
diseases that occur at an early age, and socio demographics and relations between
children’s health and various environmental conditions. Paediatric epidemiology
combines paediatrics and epidemiology, epidemiology in paediatrics, and paediatrics
analyzed by using epidemiological methods. The editors of this volume are grateful
to the publisher – in particular to Dr. Thomas Karger and Gabriella Karger, Basel –
for making the publication of this rare book possible and for having supported the
concepts of paediatric and adolescent health in general over the years. Currently,
there are not many books dealing with the special aspects of epidemiology in the pae-
diatric population. Yet, ethical, developmental and societal aspects of paediatric epi-
demiology differ quite substantially from those in general epidemiology dealing with
research in the adult population. It therefore does not come as a surprise that a chap-
ter in this book deals with ethical issues in paediatric epidemiology, another one ex-
plores biology at a young age in relation to body surface, water content, relative fat
mass and age-specific behaviors, while yet another part of the book deals with the
dilemma faced in light of incidental findings in children’s cohort studies. Classical
topics of epidemiology such as how to recruit representative samples, how to deal with
confounding variables, and how to deal with genetic information are the core areas
of the book. It is mandatory to devote some thought to the fact that quite often in
paediatric epidemiology one collects data from a representative(s) of the individual
(child) rather than from him/herself. Detection of abuse in paediatric epidemiological
cohorts not only poses ethical dilemmas but also elicits legal responses. Legal and
ethical aspects are also to be taken into account when one is to carry out epidemio-
logical studies and research on cohorts in low-income countries. Last but not the least,
this volume undoubtedly will add to our understanding of global trends in children’s
health and health issues.
The editors feel privileged to have been able to work with outstanding and well-
known authors from around the world who have truly done a remarkable job to de-
liver their chapters meticulously and contribute generously in an exemplary manner
to the book. We wish the volume success and believe that it will encourage the con-
duct of further research in the field of child and adolescent health, most importantly
VII
by raising interest and creating awareness in the causes, prevalence and trends of fre-
quently occurring civilization diseases. It is our sincere hope that this book will not
only serve as a textbook for paediatric epidemiology but also as a key reference for
those embarking on paediatric cohort studies and epidemiological studies involving
the pediatric population.
Wieland Kiess, Leipzig, Germany
Carl-Gustaf Bornehag, Karlstad, Sweden
Chris Gennings, New York, USA
VIII Kiess · Bornehag · Gennings
Kiess W, Bornehag C-G, Gennings C (eds): Pediatric Epidemiology.
Pediatr Adolesc Med. Basel, Karger, 2018, vol 21, pp 1–15 ( DOI: 10.1159/000481319 )
Ethical Issues in Paediatric Epidemiology
Maike Rotzoll · Manuel Willer
Institute for History and Ethics of Medicine, Medical Faculty, Martin-Luther-Universität Halle-Wittenberg,
Halle-Wittenberg, Germany
Abstract
In the centre of reflection on paediatric epidemiology, the most vulnerable set of people are the
persons used for test, that is, the probands. Children are at particular risk of having their rights
breached owing to their inability to express their consent, and because of their position within fam-
ily structures and social structures outside the family. This can be shown with a historical example
through the experiments carried out between 1947 and 1971 on children of various ages in youth
care homes. On the basis of ethical guidelines and national and international agreements on research
ethics, effective epidemiological research not only in the ethical, but also in the scientific sense,
should be the aspiration. The realization of knowledge in epidemiology within the framework of
public health raises the question – particularly with regard to research on children – as to what ex-
tent epidemiologists themselves are responsible for how the public receive their scientific knowl-
edge. Here, there is a need for an ethically conscious theoretical foundation and anchoring of epi-
demiology between health research and health care. © 2018 S. Karger AG, Basel
Ethical Questions of Epidemiological Research on Children
To provide effective and, not least, ethical health care for a population requires knowl-
edge, based on evidence, of the origins and spread of diseases and of the efficacy and
safety of treatment. In order to be able to usefully act preventively and interventively,
group-specific data are needed. Within the framework of the theoretical and norma-
tive premises of evidence-based medicine, studies, as sources of evidence-based
knowledge, contribute in the sense of medical progress to the improvement of the
health of children. It would appear necessary, then, in the sense of the principles of
non-maleficence and beneficence, to involve children in research as probands [1] , in