title: Contributing factors and outcomes of treatment refusal in pediatric oncology in Germany.
abstract: In Germany, about 1,800 new cases of pediatric cancer under 15 years of age are diagnosed each year and survival rates approach 80%. Although treatment is covered by health insurance and is thus available for all patients at no cost, treatment refusal and treatment discontinuation have been observed. However, no data providing numbers and outcomes for developed countries have been published thus far.
  
  
  
  A questionnaire-based survey was performed among German pediatric oncology centers to ascertain the number of treatment refusals among pediatric patients who were diagnosed between January 2008 and December 2009 in Germany.
  
  
  
  Questionnaires from 70 of 73 centers were available, and of these 13 centers reported a total of 15 cases of treatment refusal or discontinuation within this 2-year period. Five of the 15 patients died, 7 of 15 were still alive, and the current status of 3 of 15 patients was unknown. Diseases were heterogeneous. Six of the 15 parents refused treatment for their children initially, 8 of 15 discontinued during the course of treatment. Five patients were treated after parental custody had been withdrawn due to the lack of compliance. All these five patients survived. Parents' reasons given for refusal or discontinuation of treatment were related to personal health beliefs and coping strategies.
  
  
  
  Although treatment refusal or discontinuation is rare, it is accompanied by a high mortality rate. Parents' personal health beliefs play a primary role in treatment refusal or discontinuation in Germany. This emphasizes the importance of sustaining a functioning and mutually communicative physician-parent-patient relationship.
authors.affiliation: Department of Integrative Pediatric and Adolescent Medicine, Gemeinschaftskrankenhaus Herdecke, Germany.|Department of Pediatric Oncology and Hematology, University Children's Hospital Essen, Germany.
authors.forename: Tycho Jan
authors.initials: TJ
authors.lastname: Zuzak
authors.affiliation: Department of Integrative Pediatric and Adolescent Medicine, Gemeinschaftskrankenhaus Herdecke, Germany.
authors.forename: Genn
authors.initials: G
authors.lastname: Kameda
authors.affiliation: Faculty of Health, Professorship for Integrative Pediatrics Centre for Integrative Medicine, University of Witten/Herdecke, Germany.
authors.forename: Tim
authors.initials: T
authors.lastname: Schütze
authors.affiliation: German Childhood Cancer Registry (GCCR), Institute for Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Center of the Johannes Gutenberg-University Mainz, Mainz, Germany.
authors.forename: Peter
authors.initials: P
authors.lastname: Kaatsch
authors.affiliation: Department of Pediatric Oncology and Hematology, Charité-Universitätsmedizin Berlin, Berlin, Germany.
authors.forename: Georg
authors.initials: G
authors.lastname: Seifert
authors.affiliation: Department of Integrative Pediatric and Adolescent Medicine, Gemeinschaftskrankenhaus Herdecke, Germany.|Faculty of Health, Professorship for Integrative Pediatrics Centre for Integrative Medicine, University of Witten/Herdecke, Germany.
authors.forename: Rebekka
authors.initials: R
authors.lastname: Bailey
authors.affiliation: Department of Integrative Pediatric and Adolescent Medicine, Gemeinschaftskrankenhaus Herdecke, Germany.|Faculty of Health, Professorship for Integrative Pediatrics Centre for Integrative Medicine, University of Witten/Herdecke, Germany.
authors.forename: Alfred
authors.initials: A
authors.lastname: Längler
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000628:therapy*; D010290:Parents; D010817:Physician-Patient Relations; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D016312:Treatment Refusal
keywords: custody; parents; pediatric oncology; treatment refusal