Date: 30th September 2024 | Issue #2
Childhood cancers are a global health priority. Annually, 400,000 children and adolescents 0-19 years will be diagnosed with cancer. Out of this, 90% live in low- and middle-income countries (LMICs). While advancements in treatments have improved survival rates in high-income countries (HICs), the same has not been realized in LMICs, including Sub-Saharan Africa (SSA). These resource-constrained countries, in aggregate, have only 10% of the total global resources to fight childhood cancers. For these and many other reasons, only 3 out of 10 children diagnosed with cancer living in LMICs are likely to survive their cancer. This would be different if the child was born in a HIC, where 8 out of the 10 children diagnosed will survive their cancer.
At the start of June this year, over 500+ healthcare workers from Africa and other parts of the world met at the SIOP AFRICA 2024 conference in South Africa to share lessons and opportunities for improving childhood cancers management in Africa. This year’s conference theme was “Towards 2030”, referencing the goal of WHO’s Global Initiative on childhood cancer of increasing the survival rate of children with cancer globally to at least 60% by the year 2030 while reducing suffering and improving their quality of life. On a light note, the conference venue was the “Indaba Hotel”: remarkably appropriate by chance or convenience. I later learnt that “Indaba” is a Zulu word for “important meeting’, which seeks to gather the right people together at the right time to discuss the right issues.” It was no surprise, therefore, that one of the recurrent themes in most of the presentation was the urgent need to address “treatment abandonment,” a common cause for cancer treatment failure in Africa.
“Treatment abandonment” or ” treatment refusal” is not new. As far back as the late 1970s in the US, there were sensational newspaper articles, journal case reports, and even court cases about teenagers and their families refusing life-saving cancer treatment for their curable cancers. One such case was the Virginia v Cherrix court case in 2006, where the state of Virginia sued to force Abraham Cherrix, then a 16-year-old with Hodgkin’s lymphoma, to undergo further conventional medical treatment for a highly treatable cancer. So protracted was the case that it resulted in a new law, dubbed the Abrahams Law, that increased the rights of patients aged 14 to 17 years in Virginia to refuse medical treatment. The ambiguity in differentiating ‘treatment refusal’,’treatment abandonment’, treatment non-adherence and ‘lost to follow up’ persisted for a while, leading to what most experts in this field termed this ‘semantic chaos’. This lasted until 2006 when the International Society of Paediatric Oncology-Paediatric Oncology in Developing Countries (SIOP-PODC) presented a consensus definition to harmonize terms for documenting, quantifying, and comparing treatment abandonment across the globe.
In line with SIOP recommendations, treatment abandonment is defined as the termination of care by the parent/caregiver and/or not presenting for scheduled treatment for four weeks or more from the scheduled treatment date at the time of data record. In a systematic review by Friedrich and colleagues conducted in 2015, which included 101 countries globally, 99% of the cases of treatment abandonment were common in LMICs. In a way, the total number of children abandoning treatment in LMICs annually equaled the total number of new cases of childhood cancers in children under15 years expected in HICs. Most studies done in Africa indicate 10% to 60% abandonment rates of all children diagnosed, significantly impacting survival rates and overall outcomes. While this definition is universally accepted, more recently, some researchers have argued that the term ‘treatment abandonment” should be avoided as it is derogatory and puts all the blame on the parent and caregivers, which is not the case. In some instances, treatment non-compliance may be due to health system-related factors or healthcare providers themselves. In Vietnam, for example, the use of the term “treatment abandonment” is prohibited in preference for treatment non-completion.
The causes of treatment abandonment in Africa are multifactorial and complex. More recent studies have grouped them into supply-side barriers like high cost of care (associated with treatment, diagnostics, and hidden costs like transportation and lodging). Other supply-side barriers include lack of insurance, long travel time to cancer centers, long waiting times, and lack of social support for the family. On the demand- side (patient/caregiver), low income or poverty, cost of transport, poor public awareness, and knowledge on cancer contribute to abandonment. The interplay of these factors in Africa is always complex. Even in countries like Zambia and Malawi, where cancer care has been provided for free, there are still high rates of abandonment. It is thought that while the patients do not have to pay for treatment, other indirect costs like opportunity cost of labor income lost while caregiver is away from home, perceptions of cancer as an incurable disease, and preference for complementary and alternative medicine highly influence the family choice to abandon conventional cancer treatment.
In most low-resource settings, treatment abandonment is a significant “sore” to achieving optimal outcomes in childhood cancers. Nevertheless, it remains the most modifiable risk factor for treatment failure. This calls for concerted multi-sectorial efforts to address these challenges and develop sustainable and context-appropriate interventions. This will require addressing all factors involved along the cancer continuum from the community to the policy-making level in a bid to prioritize access to affordable quality care, promote community engagement, and strengthen health care systems using innovative interventions.
It is, therefore, imperative that addressing non-completion of childhood cancer treatment should be one of the strategic priorities in all cancer control plans in Africa. Just as the word “indaba” from the Zulu community emphasizes “deep talk” and acknowledges that we all have something important to say, all stakeholders have a role to play if 60% of the children in Africa are to survive their cancer by the year 2030.
Gilbert Olbara is a researcher at the Integrated Cancer Research Foundation of Kenya.