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Open Access 01-12-2020 | Brain Tumor | Study protocol

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

Authors: Julia Roick, Reinhard Berner, Toralf Bernig, Bernhard Erdlenbruch, Gabriele Escherich, Jörg Faber, Christoph Klein, Konrad Bochennek, Christian Kratz, Joachim Kühr, Alfred Längler, Holger N. Lode, Markus Metzler, Hermann Müller, Dirk Reinhardt, Axel Sauerbrey, Florian Schepper, Wolfram Scheurlen, Dominik Schneider, Georg Christof Schwabe, Matthias Richter

Published in: BMC Pediatrics | Issue 1/2020

Abstract

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.

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Title: 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
Authors: Julia Roick
Reinhard Berner
Toralf Bernig
Bernhard Erdlenbruch
Gabriele Escherich
Jörg Faber
Christoph Klein
Konrad Bochennek
Christian Kratz
Joachim Kühr
Alfred Längler
Holger N. Lode
Markus Metzler
Hermann Müller
Dirk Reinhardt
Axel Sauerbrey
Florian Schepper
Wolfram Scheurlen
Dominik Schneider
Georg Christof Schwabe
Matthias Richter
Publication date: 01-12-2020
Publisher: BioMed Central
Keywords: Brain Tumor
Sarcoma
Leukemia
Published in: BMC Pediatrics / Issue 1/2020
Electronic ISSN: 1471-2431
DOI: https://doi.org/10.1186/s12887-020-1943-3

At a glance: The STEP trials

Springer Medicine

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

Abstract

Background

Methods

Discussion

Trial registration

At a glance: The STEP trials

Springer Medicine

Abstract

Background

Methods

Discussion

Trial registration

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