Diagnosis interval is the largest contributor to time to diagnosis and treatment for childhood cancer patients in India results of the InPOG-ACC-16-02 study

Abstract

Background: Outcomes of childhood cancer in low- and middle-income countries lag behind those in high-income countries with challenges to accessing healthcare. Little is known about the patient journey from the time of onset of symptoms to ultimately receiving treatment in India. This multi-center study addresses this. Methods: This prospective, observational, cross-sectional study was conducted across 69 centers (48% public, 26% private, 9% trust) in North and East India from 2019-2021. All newly diagnosed patients <18 years of age who commenced cancer-directed treatment were enrolled over a 12-month period. Information was gathered from the parent/carer using a questionnaire. Outcomes of interest were patient interval(PI) first symptom to a first healthcare provider(HCP) contact, diagnostic interval(DI) first HCP contact to diagnosis, treatment interval(TRI) diagnosis to start of treatment, the total time to diagnosis(TTD) - first symptom to diagnosis, and total time to treatment(TTT) - first symptom to start of treatment. Linear regression was used to explore the association of demographic, socio-economic, and disease variables with outcomes of interest. Results: 2234 patients (65% male, median age 6 years, 66.1% hematolymphoid cancers) were recruited. 53.6% of families were lower and upper-lower class (Kuppuswamy scale). The median (IQR) PI, DI, TRI, TTD, and TTT were 3(1-12), 37(14-85), 3(0-9), 38(22-101), and 57(27-113) days respectively. TTT varied significantly (p<0.05) with age (greatest 15-19 years), center type (greatest public sector), region (greatest North East), socio-economic status (greatest in the lowest socio-economic quintile), and type of cancer (greatest in bone and soft tissue sarcomas). The associations were similar for PI, DI, TRI, and TTD except that age was not a significant variable for PI. Conclusions: DI is the largest contributor to TTD and TTT for childhood cancer patients in India. Specific interventions for timely diagnosis by creating awareness and developing referral pathways are recommended to minimize delays.