Holistic support coupled with prospective tracking reduces abandonment in childhood cancers: A report from India

Pediatr Blood Cancer. 2019 Jun;66(6):e27716. doi: 10.1002/pbc.27716. Epub 2019 Mar 22.

Abstract

Background: High cure rates of over 80% in childhood cancers reported from high-income countries (HICs) are not replicated in low- and middle-income countries (LMICs). Treatment abandonment (TxA) is an important reason for this poorer outcome. We assessed the effect of a holistic support group approach coupled with prospective tracking on TxA in children with cancer in a limited-resources environment.

Methods: In 2010, all existing nongovernmental organizations (NGOs) working with childhood cancer at our hospital were brought together to form a pediatric cancer foundation with the aim of providing holistic support to the patient and family, including financial, psychosocial, lodging, educational, and bereavement support. Simultaneously, prospective tracking of all children with a Time-Responsive Electronic Abandonment Tracking (TREAT) system was also established. The impact of these measures on TxA over the 2009-2016 period was compared using the log-rank test.

Results: The annual rate of abandonment reduced from 20% in 2009 to 10.4% in 2010 and 5.2% in 2011. It has been consistently between 3% and 6% from 2012 to 2016 (P -0.04). TxA after the initiation of treatment dropped from 9% in 2009 to 1% in 2016 (P -0.02), while refusal to initiate treatment dropped from 11% to 2.7% (P -0.23) over the same period.

Conclusions: A holistic support group consisting of the hospital team, as well as existing NGOs and governmental organizations, along with a systematic and prospective tracking system significantly reduced abandonment in a resource-constrained setting. This cost-effective holistic support group may be applicable in other LMICs with similar healthcare systems.

Keywords: abandonment; childhood cancer; holistic support; tracking.

MeSH terms

  • Adolescent
  • Child
  • Child, Preschool
  • Developing Countries*
  • Female
  • Follow-Up Studies
  • Holistic Health / statistics & numerical data*
  • Humans
  • India / epidemiology
  • Infant
  • Infant, Newborn
  • Male
  • Neoplasms / epidemiology
  • Neoplasms / pathology
  • Neoplasms / therapy*
  • Poverty*
  • Prognosis
  • Prospective Studies
  • Treatment Refusal / statistics & numerical data*