Characterizing approaches to treatment decision-making for children presenting with advanced cancer in resource-limited settings

More than 80% of children who receive cancer treatment in countries with significant resources survive their illness. At diagnosis, the provision of cure-directed therapy is considered the norm for most of these children. However, the global burden of pediatric cancer is not distributed equitably. Approximately 90% of children diagnosed with cancer live in resource-limited countries. Children presenting with advanced cancer are particularly vulnerable, as many face barriers to accessing the health care they need, resulting in adverse outcomes.

In a study published in Supportive Care in Cancer, St. Jude researchers investigated approaches to clinical decision-making for children presenting with advanced cancer in resource-limited countries. “We identified a research gap. We had a poor understanding of how physicians approach decision-making for these children and recognized the importance of using qualitative research methods to explore this topic. This was a key first step toward designing interventions to improve patient outcomes and clinician workflows,” said first author Marta Salek, MD, MPH, Department of Global Pediatric Medicine.

Eleven participants from the St. Jude Global Alliance community, representing each World Health Organization–designated region, were invited to participate in focus groups. As experts in pediatric oncology, the group offered unique insights into their treatment decision-making processes within their local contexts. 

“We asked participants to brainstorm factors that influence their treatment decision-making for a child presenting with advanced cancer at diagnosis, which were then reviewed and debated,” Salek explained. “This was followed by discussions regarding whether physicians considered treatment with noncurative intent for these children at diagnosis, including when it could or could not be appropriate. We also asked them to reflect on local definitions of ‘poor-prognosis cancer’ at diagnosis.”

The focus groups identified many multi-level health system factors involved in decision-making, including family preferences, available resources, family health care access, local culture, and national payment structures for delivering childhood cancer therapy. These results illustrated that participants experienced difficulties with complex decision-making at diagnosis. Furthermore, the data suggested these challenges may be magnified by diverse factors underrepresented in existing decision-making frameworks or childhood cancer treatment guidelines. Inconsistent definitions of a “poor prognosis” amplified these difficulties. 

Salek and her team plan to explore treatment decision-making in greater depth by leveraging diverse perspectives from patients, families, and multidisciplinary clinicians. With this qualitative research, they aim to develop pragmatic strategies to support treatment decision-making in resource-limited settings adaptable to local contexts and empower physicians to offer the best available treatment options. In instances when curative-intent treatment at diagnosis is not possible, such insights could highlight areas within health systems that need strengthening.

Improving outcomes for children diagnosed with cancer regardless of where they live is at the heart of this work. “We want to ensure that, in the future, all children presenting with cancer can be offered treatment with curative intent safely,” said Salek.