Prevalence, predictors, causes of treatment refusal and abandonment in children with acute lymphoblastic leukaemia over 18 years in North India. Treatment phase affecting factors: A step towards better focussed counselling

Abstract

BackgroundTreatment refusal or abandonment are among the major causes of the survival gap between developed and developing countries. MethodsThis retrospective observational study analyzed records of children aged <18 years with acute lymphoblastic leukemia (ALL) registered for treatment at a tertiary-care teaching hospital, North India, between 1995 and 2012. Children who refused or abandoned therapy were tracked, and reasons for refusal/abandonment were recorded by telephone interviews or by surface mail. Sociodemographic parameters were compared using chi-square/Student t-test to identify predictors of refusal/abandonment. ResultsTreatment refusal was noted in 16.8% (96/572) of children with ALL; it was statistically higher for infants (p = 0.004), girls (p = 0.04), children of parents with poor literacy (p < 0.001), and those of lower socioeconomic status (p < 0.001). Main causes of treatment refusal were financial constraints (59.4%) and a misplaced belief about the incurability of cancer (22.9%). Therapy once started, was abandoned by 139/476 children (29.2%), the majority (41%) during induction, followed by maintenance (17.9%). Major reasons for abandonment were financial constraints (34.5%), false perception of cure (20%), poor general condition of the child (15%), no improvement in the child (13%), and blood donation refusal (3%). The reasons cited were different in different treatment phases. Abandonment was statistically higher in children from rural background (p < 0.001) or lower socioeconomic status (p < 0.001), and in those with fathers having a lower literacy status (p < 0.001). Low hemoglobin (p = 0.01) and severe wasting (p = 0.01) was greater in children who abandoned treatment. ConclusionTreatment refusal or abandonment, noted in 40% of children, was due mainly to monetary difficulties, disbeliefs regarding curability, or false perceptions of cure; these factors need to be addressed to improve survival, particularly in children from rural areas and those of parents with a lower literacy status.