Areesha Alam1, Archana Kumar2. 1. Division of Pediatric Hematology-Oncology, Department of Pediatrics, King George's Medical University, Shah Mina Road, Chowk, Lucknow, India. 2. Division of Pediatric Hematology-Oncology, Department of Pediatrics, King George's Medical University, Shah Mina Road, Chowk, Lucknow, India. Electronic address: archanakumar@kgmcindia.edu.
Abstract
BACKGROUND: Treatment refusal or abandonment are among the major causes of the survival gap between developed and developing countries. METHODS: This 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. RESULTS: Treatment 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. CONCLUSION: Treatment 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.
BACKGROUND: Treatment refusal or abandonment are among the major causes of the survival gap between developed and developing countries. METHODS: This 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. RESULTS: Treatment 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. CONCLUSION: Treatment 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.