Incomplete treatment for non-medical reasons (so called ‘treatment abandonment’) is the most common cause of treatment failure in sub-Saharan Africa. It is largely preventable. Poverty and inability of families to afford out-of-pocket costs associated with treatment are overriding causes.
A CANCaRe Africa pilot project in Malawi; ‘towards zero percent abandonment’ showed that covering all transport costs for families to and from the hospital significantly reduced ‘treatment abandonment’ from 19% to 7%.
We developed a ‘positive’ cycle in which we use the available evidence to join forces with partners in the region to advocate for families and raise funds; use the funds to support families with out-of-pocket costs; evaluate impact of the intervention and plan to disseminate and use the new and rigorous evidence for continued and strengthened advocacy.
The aim of ‘Zero Abandonment from Start to Finish’ is to reduce ‘treatment abandonment’ to less than 10% and ideally to prevent it completely. By enabling families to complete the treatment of their child with cancer, survival will increase.
Leadership Zero Abandonment from Start to Finish
Project leader is Dr Trijn Israels (Paediatric Oncologist, Malawi). Mr Junious Sichali (Social Scientist, Malawi) is the project manager and lead of the social science and advocacy component of the project. Mrs Cecilia Mdoka (Malawi), is the central data manager of the programme. Mr Daniel McKenzie (Zimbabwe, Director Kidzcan and Board Member Childhood Cancer International Africa – CCI Africa) is supporting the fundraising task group.
Mr Junious Sichali Dr Trijn Israels Mrs Cecilia Mdoka Mr Daniel McKenzie
Members of the steering committee are Dr Glenn Mbah (Cameroon) and Dr George Chagaluka (Malawi). Prof Elizabeth Molyneux (UK and Malawi) is an advisor to the programme.
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Local evidence, CANCaRe Africa publications and impact of interventions
A qualitative pilot study in Malawi in 2008 showed that financial issues were the most important concerns of guardians related their ability to complete treatment of their child. This was confirmed in a qualitative study in Uganda in 2021.
A prospective descriptive study on treatment abandonment in the CANCaRe Africa network showed that the need to borrow money to reach the hospital was the only significant predictor of treatment abandonment. We also found that 50 USD was sufficient to cover out-of-pocket costs for 4 weeks of treatment for 50% of all families.
We piloted the implementation of cash incentives to primary caregivers of children with newly diagnosed common and curable cancers in Malawi in a prospective study. The intervention consisted of cash incentives for all transport costs during the whole treatment, on average 200 Euro per patient. Families in Malawi do not have to pay for diagnosis, treatment or accommodation while staying at the hospital. Treatment abandonment decreased significantly from 19% (49 of 264) to 7% (10 of 150) (p<0.001). A significant increase in the proportion of patients alive without evidence of disease from 38% (57/149) to 53% (44/83) (P = 0.03) was demonstrated in patients with the most significant decrease in abandonment (Wilms tumour, retinoblastoma and ALL).
CANCaRe Africa publications on treatment abandonment
Israels T, Molyneux E et al. The guardians’ perspective on paediatric cancer treatment in Malawi and factors affecting adherence. Pediatr Blood Cancer. 2008.
Chakumatha E, Molyneux E, Chagaluka G, Israels, T et al. Outcome at the end of treatment of patients with common and curable childhood cancer types in Blantyre, Malawi. Pediatr Blood Cancer. 2020.
Chagaluka G, Afungchwi GM, Molyneux EM, Sung L, Israels T. et al. Treatment abandonment: A report from the collaborative African network for childhood cancer care and research-CANCaRe Africa. Pediatr Blood Cancer. 2021.
Atwiine B et al. “Money was the problem”: Caregivers’ self-reported reasons for abandoning their children’s cancer treatment in southwest Uganda. Pediatr Blood Cancer. 2021.
Chakumatha E, Chagaluka G, Molyneux EM, Israels T et al. Towards zero percent treatment abandonment of patients with common and curable childhood cancer types in Blantyre, Malawi. Pediatr Blood Cancer. 2022.
Funders and supporters
We are very grateful for a grant from the Foundation S – My Child Matters programme supporting this project.
We are very grateful for funding from the SIOP Programme for Advancing the Research Capacity (PARC)for Paediatric Cancer Clinical Trials in Low Income Countries and Middle Income Countries.
We are very grateful for the support and commitment of Tim Hodgkinson and his Wilms Cancer Foundation, leading the fundraising task group of the programme.