When I look at the outcomes of children with cancer in developing countries including India and try to understand the survival gap with that seen in the developed world, the one fact which strikes me most is the high level of children with cancer who abandon treatment. This is as much a social issue as it is a medical one. There is a need to recognise this, measure it, report it and then tackle it. In this regard, I would like to bring to your attention, the recently published position statement of the SIOP PODC Abandonment of Treatment of Working Group (Mostert et al, 2011).
"Almost 80% of children with cancer in resource-rich countries can be cured by timely, intensive multimodality treatment and robust supportive care. However, only 20% of the world's children with cancer live in these countries; the remaining 80% reside in resource-poor nations and have a substantially lower chance of survival. Abandonment of treatment is a major cause of therapeutic failure in these resource-poor countries, affecting up to 50—60% of cases.4 Abandonment constitutes failure to start or complete curative treatment (except in situations when such treatment is contraindicated for medical reasons—eg, the patient is too ill).
At the 2010 Congress of the International Society of Pediatric Oncology (SIOP), the Abandonment of Treatment Working Group was established as one of 12 new working groups within the Pediatric Oncology in Developing Countries (PODC) structure. Its aims are to: heighten awareness of abandonment as a major cause of treatment failure in resource-poor countries; to elucidate the contributing factors; and to identify and widely disseminate effective solutions. To enable comparisons of studies worldwide, the international paediatric oncology community must adopt consistent terminology and reliably identify and document abandonment. Only in this way can the magnitude of the global problem be measured accurately, the underlying causes ascertained, and solutions devised.
For these reasons, the Working Group offers five recommendations. First, we recommend that abandonment of treatment be documented as an adverse event in childhood cancer studies in resource-poor countries. Patients who do not begin or complete treatment should not be excluded from survival analyses. Event-free survival should be analysed in two ways: by treating abandonment as an adverse event and by censoring cases at the time of abandonment. Because some children might be cured if they abandon treatment after completing most of their planned therapy, these two estimates will reflect the upper and lower bounds of the true event-free survival estimate. Second, we propose that abandonment of treatment be defined as failure either to begin (conventionally termed refusal) or to continue the planned course (abandonment), because both are likely to have related underlying causes and could benefit from similar interventions. However, the timing of abandonment should be documented to help to identify related factors. Third, treatment in resource-poor settings might be interrupted for various reasons, including financial and transportation difficulties. When such interruptions herald full abandonment and what the effect on outcomes will be are difficult to predict. We suggest that abandonment of treatment be defined as a hiatus of 4 or more weeks in the scheduled treatment; this period is based on empirical evidence and on anecdotal observations that, after an absence of this length, patients are unlikely to return. In the rare event that patients do return after a prolonged interruption, the treatment options might be limited in the setting of refractory disease or imminent death. Further research will help to establish whether this 4-week working definition needs revision. Fourth, we recommend that abandonment of treatment should be used only in the context of treatment given with the intention of cure. However, if palliation is the only achievable goal because of disease factors or poor socioeconomic conditions (particularly relevant in resource-poor countries), these children must be documented carefully, tracked, and analysed to elucidate the reasons underlying the administration of solely palliative, symptomatic, or end-of-life care to children with curable cancers. Finally, the Working Group recognises that some might perceive the term abandonment of treatment as implying that the patients and their parents are solely responsible; we emphasise that this is not the case. Abandonment of treatment is as much a socioeconomic issue as a medical one, and is often the result of various factors beyond the control of the patients and parents.
Abandonment of treatment can no longer be ignored by the international paediatric oncology community. The members of our Working Group offer these recommendations in the belief that all children with cancer have the right to an equitable chance of survival."