Impact of financial support and focussed group counselling on treatment abandonment in children with acute lymphoblastic leukaemia. Experience over 22 years from North India.

OBJECTIVES: Efforts are being made worldwide to prevent abandonment in children with leukaemia. The study aimed to determine changes in treatment refusal, treatment abandonment rates and its reasons in response to financial support and focussed group counselling.

METHODS: A retrospective cohort study conducted at paediatric haematology-oncology unit, King George's Medical University, Lucknow among children <18 years admitted with acute lymphoblastic leukaemia from 1995 to 2017. Study divided into three periods; Phase 1 (1995-March 2003): Basic support, Phase 2 (April 2003-June 2009): Financial support and Phase 3 (July 2009-2017): Financial, social support with group counselling. Phase 3- subdivided into 3a: group counselling and 3b: intensified group counselling.

RESULTS: Number of children registered for treatment during phase 1, 2, 3a, 3b: 176, 200, 360 and 305. Treatment refusal decreased significantly over time: 21% vs. 14.5% vs. 12.5% vs. 5.9% (p<0.001), especially during phase 3b. Though no change was found in treatment abandonment during phase 2, abandonment significantly reduced in phase 3a (20.3%) as compared to phase 1 (30.2%), with the proportion of children abandoning, due to financial constraints, declining. Abandonment further reduced in phase 3b vs. phase 3a (11.1% vs. 20.3%) (p=0.001). After adjusting for other variables, abandonment was found to decrease independently in phase3 (a, b) as compared to phase 1 (p1=0.017, p2=0.007).

CONCLUSIONS: Though helpful, financial assistance unaccompanied by counselling may be insufficient to bring a radical change. Hence, parental counselling, emphasising on treatment adherence and the aftermaths of treatment abandonment, is indispensable for preventing abandonment in semi-literate populations.