A report about treatment refusal and abandonment in children with acute lymphoblastic leukemia in China, 1997–2007

BackgroundTo analyze the causes and consequence of treatment refusal and abandonment in childhood acute lymphoblastic leukemia (ALL) treated in Wuhan Union Hospital of China.MethodsWe collected recorded data and interviewed families of the children with ALL diagnosed between January 1997 and August 2007, who refused or abandoned treatment.Results323 patients were diagnosed with ALL. 173 patients (173/323, 53.6%) refused therapy and 35 (35/323, 10.8%) cases abandoned treatment. 191 (191/208, 91.8%) of these children were telephone/mail-visited. Different people had different reasons for refusal or abandonment. Financial difficulty and belief of ALL incurability were the main reasons for abandonment. Transportation difficulties and fear of severe side effects were also important reasons. Of the 173 patients who refused treatment, 13 patients lost follow-up. 160 parents were interviewed and 1 (6.3%) child was still alive at the date of last follow-up. Of the 35 patients who abandoned treatment, 4 patients lost follow-up. 31 parents were interviewed and 2 (6.5%) children were still alive at the date of last follow-up.ConclusionMedical insurance and a systemic health education are extremely required for childhood ALL in low middle income countries.