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Social inequalities in the participation and activity of children and adolescents with leukemia, brain tumors, and sarcomas (SUPATEEN): a protocol for a multicenter longitudinal prospective observational study

  • Background: About 2000 children and adolescents under the age of 18 are diagnosed with cancer each year in Germany. Because of current medical treatment methods, a high survival rate can be reached for many types of the disease. Nevertheless, patients face a number of long-term effects related to the treatment. As a result, physical and psychological consequences have increasingly become the focus of research in recent years. Social dimensions of health have received little attention in health services research in oncology so far. Yet, there are no robust results that allow an estimation of whether and to what extent the disease and treatment impair the participation of children and adolescents and which factors mediate this effect. Social participation is of great importance especially because interactions with peers and experiences in different areas of life are essential for the development of children and adolescents. Methods: Data are collected in a longitudinal, prospective, observational multicenter study. For this purpose, all patients and their parents who are being treated for cancer in one of the participating clinics throughout Germany will be interviewed within the first month after diagnosis (t1), after completion of intensive treatment (t2) and half a year after the end of intensive treatment (t3) using standardized questionnaires. Analysis will be done by descriptive and multivariate methods. Discussion: The results can be used to identify children and adolescents in high-risk situations at an early stage in order to be able to initiate interventions tailored to the needs. Such tailored interventions will finally reduce the risk of impairments in the participation of children and adolescents and increase quality of life. Trial registration: ClinicalTrials.gov: NCT04101123.
Metadaten
Author:Julia RoickORCiDGND, Reinhard BernerORCiDGND, Toralf BernigGND, Bernhard ErdlenbruchGND, Gabriele Escherich, Jörg Faber, Christoph Klein, Konrad BochennekORCiDGND, Christian Kratz, Joachim Kühr, Alfred Längler, Holger LodeORCiDGND, Markus Metzler, Hermann Müller, Dirk Reinhardt, Axel SauerbreyGND, Florian Schepper, Wolfram Scheurlen, Dominik Schneider, Georg Christof Schwabe, Matthias Richter
URN:urn:nbn:de:hebis:30:3-528811
DOI:https://doi.org/10.1186/s12887-020-1943-3
ISSN:1471-2431
Pubmed Id:https://pubmed.ncbi.nlm.nih.gov/32005112
Parent Title (English):BMC pediatrics
Publisher:BioMed Central
Place of publication:London
Document Type:Article
Language:English
Year of Completion:2020
Date of first Publication:2020/01/31
Publishing Institution:Universitätsbibliothek Johann Christian Senckenberg
Release Date:2020/02/19
Tag:Brain tumors; Cancer; Children and adolescents; Leukemia; Patient reported outcomes; Sarcomas; Social participation
Volume:20
Issue:1, Art. 48
Page Number:8
First Page:1
Last Page:8
Note:
Open Access: This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
HeBIS-PPN:461395894
Institutes:Medizin / Medizin
Dewey Decimal Classification:6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit
Sammlungen:Universitätspublikationen
Licence (German):License LogoCreative Commons - Namensnennung 4.0