Comparing childhood leukaemia treatment before and after the introduction of a parental education programme in Indonesia.

SETTING: 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.

INTERVENTION: 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.

DESIGN: 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.