Wednesday 29 June 2011

Abandonment of treatment for childhood cancer: A Position Statement by the SIOP PODC Working Group

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."


  1. Dear Raman
    We have developed a habit of not going in to core issue when it comes to solving the problems in Oncological management
    Abandonment is a serious issue and some how it has not been seen in a proper manner
    Pardon me for being so harsh most of the time but the realism has to preveail some day
    It is easy to blame patient , his economy and other things for abandonment , is it not?
    Have we introspected ourselves first and our doings.
    In India :
    1- We have not started observing National and International Paediatric cancer day. I have been insisting two day for this awareness – one national that is on Chacha Nehru’s birth day i.e. 14th NOV. ( for so many practical and emotional reasons) and second one is the international Ped. Ca day, which is expected to be observed by all those who think that they are the esteemed ped. Oncologists. THIS INDEED SHALL FETCH EARLY CURABLE DISEASE ALONG WITH LATE STAGE ALSO.
    2- For given circumstances when we have started talking about the curability of paediatric cancers, then why do we have to treat them as OPD, some arrangements are certainly required for some patients to be treated as indoor, sheltered and nourished throughout the treatment and it will have a deferent impact on survival. I have seen such things happening in the first paediatric oncology ward of this country where children remained for prolonged period .
    3- Third important fact is that we have not initiated the work culture of patient retrieval system. If the patient does not report to use for the follow up , it is fine , no problem. This is where we loose data.
    Patient retrieval system is quite labour intensive and needs dedication for which neither we have a mind set nor the time. If NGOS are involved for this purpose , there will be a large number of cases who can be taken off from the list of treatment abandonment.
    4- IN a country like India where we need to have more generated data on Indian patients there is a great need of societal contribution and that come easily if the efforts are made. BY this type of contributions the one cause- financial incapability of the patient is taken care off- both ways from day to day expenditure as well as for purchase of durgs and supportive.
    I am in deed sceptical about acceptance of my ideas and suggestions by Pediatric Oncologist Community from which this suggestions should have come first instead of my writing.
    With best regards
    Prof. Manoj Sharma

  2. I could not agree more with all you have suggested. All these ideas make perfect sense and I know of initiatives across the world and indeed in India on similar lines. What is needed is for these "micro" initiatives to go "macro" and be accepted as standard of care as it is to give chemotherapy, etc.