title: Comparing childhood leukaemia treatment before and after the introduction of a parental education programme in Indonesia.
abstract: METHODS
  Previously, treatment and the results of treatment for childhood acute lymphoblastic leukaemia (ALL) in Indonesia differed significantly between poor and prosperous patients. Poor patients received less individual attention from oncologists and access to parental education and donated chemotherapy was lacking.
  
  
  METHODS
  A structured parental education programme for both poor and prosperous parents was introduced in January 2004 to improve access to parental education and donated chemotherapy. The programme consisted of a video presentation, an information booklet, DVD, audiocassette, a statement-of-understanding for donated chemotherapy, and a complaints procedure. Informed consent was also sought.
  
  
  OBJECTIVE
  Our study compared childhood ALL treatment outcome before and after the introduction of the parental education programme.
  
  
  METHODS
  The medical records of 283 children with ALL diagnosed before (1997-2002; n = 164) and after (2004-2006; n = 119) the introduction of the education programme were reviewed. Data on treatment results and parental socioeconomic status were collected.
  
  
  RESULTS
  After the introduction of the education programme, treatment refusal decreased (from 14% to 2%) and event-free survival increased (from 13% to 29%) significantly among poor patients. Treatment dropout increased (from 0% to 13%) significantly among prosperous patients. Overall, toxic death (from 23% to 36%) increased significantly, but there was no significant difference in event-free survival.
  
  
  CONCLUSIONS
  After introduction of the programme, treatment refusal decreased and event-free survival increased significantly among poor families. However, improved knowledge, skills and communication are still required to combat the high rates of toxic death and treatment dropout. Treatment intensity should be accompanied by improved supportive care.
authors.affiliation: Paediatric Haematology Oncology Division, Department of Paediatrics, VU University Medical Centre, Vrije University, Amsterdam, The Netherlands. s.mostert@vumc.nl
authors.forename: S
authors.initials: S
authors.lastname: Mostert
authors.forename: M N
authors.initials: MN
authors.lastname: Sitaresmi
authors.forename: C M
authors.initials: CM
authors.lastname: Gundy
authors.forename: V
authors.initials: V
authors.lastname: Janes
authors.lastname: Sutaryo
authors.forename: A J P
authors.initials: AJ
authors.lastname: Veerman
mesh_terms: D000293:Adolescent; D000971:Antineoplastic Combined Chemotherapy Protocols / Q000627:therapeutic use*; D002648:Child; D002675:Child, Preschool; D003906:Developing Countries; D005260:Female; D006266:Health Education / Q000379:methods / Q000458:organization & administration*; D006297:Health Services Accessibility / Q000706:statistics & numerical data; D006801:Humans; D007214:Indonesia; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010290:Parents / Q000193:education*; D010352:Patient Dropouts / Q000706:statistics & numerical data; D054198:Precursor Cell Lymphoblastic Leukemia-Lymphoma / Q000188:drug therapy*; D015397:Program Evaluation; D012923:Social Class; D012959:Socioeconomic Factors; D016019:Survival Analysis; D016896:Treatment Outcome; D016312:Treatment Refusal / Q000706:statistics & numerical data