von Helmuth-Günther Dörr ; Markus Bettendorf ; Gerhard Binder ; Berthold Hauffa ; Klaus Mohnike ; Hermann L. Müller ; Thomas Reinehr ; Günter K. Stalla ; J. Woelfle
von Julia Roick ; Reinhard Berner ; Toralf Bernig ; Bernhard Erdlenbruch ; Gabriele Escherich ; Jörg Faber ; Christoph Klein ; Konrad Bochennek ; Christian Peter Kratz ; Joachim Kühr ; Alfred Längler ; Holger N. Lode ; Markus Metzler ; Hermann L. Müller ; Dirk Reinhardt ; Axel Sauerbrey ; Florian Schepper ; Wolfram Scheurlen ; Dominik T. Schneider ; Georg Christof Schwabe ; Matthias Richter
Children and adolescents, Cancer, Social participation, Patient reported outcomes, Brain tumors, Leukemia, Sarcomas
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.
von Hermann L. Müller ; Johannes H. M. Merks ; Birgit Geoerger ; Jacques Grill ; Darren Hargrave ; Julia Glade Bender ; Sridharan Gururangan ; Fariba Navid ; Michael Johnston ; Jeanette Bachir ; Markus C. Elze ; Sabine Fürst-Recktenwald