Setting: Previously, childhood acute lymphoblastic leukaemia (ALL) treatment results in Indonesia differed significantly between poor and prosperous patients. There was striking disparity in the way treatment was provided to poor, as opposed to prosperous, patients. Poor patients received less individualized attention from oncologists. Access to parental education and donated chemotherapy was lacking.
Intervention: Starting from January 2004, a structured parental education program for all parents, poor and prosperous, was introduced to improve access to parental education and donated chemotherapy. The program contained video-presentation in hospital, information-booklet, DVD, audiocassette, informed-consent, statement-of-understanding for donated chemotherapy, and complaints-procedure.
Objective: Our study compared childhood ALL treatment outcome before and after introduction of parental education program.
Design: We reviewed medical records of 283 children with ALL diagnosed during two periods: before (1997-2002; n=164) and after (2004-2006; n=119) introduction of education program. Data on treatment results and parental socioeconomic status were collected.
Results: After introduction of education program, treatment refusal decreased (14%-2%) and event-free survival increased (13%-29%) significantly in poor patients. Treatment abandonment increased (0%-13%) significantly in prosperous patients. In overall population toxic-death (23%-36%) increased significantly and no significant difference in event-free survival was found.
Conclusions: After program introduction, poor families received structured information and donated chemotherapy for the first time. Their treatment refusal decreased and event-free survival increased significantly. To improve survival significantly in overall population, toxic-death and treatment abandonment must diminish. Improving knowledge, skills and communication of doctors is required to manage treatment-toxicity and prevent abandonment. Treatment intensity should be matched with possibilities of supportive-care.