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. 2020 Jan 31;20(1):48.
doi: 10.1186/s12887-020-1943-3.

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

Julia Roick  1 , Reinhard Berner  2 , Toralf Bernig  3 , Bernhard Erdlenbruch  4 , Gabriele Escherich  5 , Jörg Faber  6 , Christoph Klein  7 , Konrad Bochennek  8 , Christian Kratz  9 , Joachim Kühr  10 , Alfred Längler  11 , Holger N Lode  12 , Markus Metzler  13 , Hermann Müller  14 , Dirk Reinhardt  15 , Axel Sauerbrey  16 , Florian Schepper  17 , Wolfram Scheurlen  18 , Dominik Schneider  19 , Georg Christof Schwabe  20 , Matthias Richter  21
Affiliations

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

Julia Roick et al. BMC Pediatr. .

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.

Keywords: Brain tumors; Cancer; Children and adolescents; Leukemia; Patient reported outcomes; Sarcomas; Social participation.

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Conflict of interest statement

There are no competing interests, neither financial nor non-financial.

Figures

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Fig. 1
Study hypotheses
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References

    1. Kaatsch P, Grabow D, Spix C. Mainz: Institut für Medizinische Biometrie, Epidemiologie und Informatik at the University Medical Center of the Johannes Gutenberg University Mainz. 2016. German childhood Cancer registry – annual report 2016 (1980–2015)
    1. Imbach Paul, Kühne Thomas, Arceci Robert J., editors. Pediatric Oncology. Berlin, Heidelberg: Springer Berlin Heidelberg; 2006.
    1. Creutzig U, Henze G, Bielack S, Herold R, Kaatsch P, Klussmann J, et al. Krebserkrankungen bei Kindern: Erfolg durch einheitliche Therapiekonzepte seit 25 Jahren. Deutsches Ärzteblatt. 2003;100(A):842–852.
    1. Krebs in Deutschland für 2013/2014. 11. Ausgabe. Robert Koch-Institut (Hrsg) und die Gesellschaft der epidemiologischen Krebsregister in Deutschland e.V. (Hrsg). Berlin; 2017.
    1. Sklar CA. Overview of the effects of cancer therapies: the nature, scale and breadth of the problem. Acta Paediatr Suppl. 1999;88:1–4. doi: 10.1111/j.1651-2227.1999.tb14395.x. - DOI - PubMed

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