Tuesday 8 December 2015

Collaboration - in Africa and in India

Collaboration among colleagues, institutions and indeed countries has been a cornerstone in the successful journey to improving the outcomes of children with cancer. The scientific literature is replete with examples of such collaborations. At the same time, there is also a glaring absence of scientific literature related to childhood cancer on collaboration among individuals and institutions in low and middle income countries till recently. There have been several positive developments in the last decade, most notable among them are AHOPCA (collaboration among Central American countries) and GFAOP (collaboration among several francophone African nations) and the benefits of these collaborations are becoming quickly evident.

Another such collaboration is the Collaborative Wilms Tumour Africa Project, a remarkable initiative by colleagues from 8 institutions in 5 countries in Sub-Saharan Africa (Cameroon, Ethiopia, Ghana, Malawi, Uganda).

Their aim is very simple - take a curable childhood cancer (like Wilms tumour), treat in a standard scientific manner keeping in mind the local support services and at the same time build capacity in terms of guidelines, pathology, radiology, supportive care, etc. Having received funding from several organisations including World Child Cancer and the the International Society of Pediatric Oncology, the project has taken off well and has recruited more than 100 patients into the study. It is truly my honour to be associated as an ambassador to this project. I personally, continue to be inspired by the whole project and the individuals involved including my dear friend Trijn Israels. More information on this can be found on the dedicated website http://paedonc.wix.com/wilmsafricaproject.

And this brings me to India, where we have also suffered from the lack of collaboration among individuals and institutions. This is now rapidly changing and the rejuvenation of Indian Pediatric Oncology Group as well as the start of two multi-centre studies on Hodgkin disease (already recruiting in 11 centres in India) as well as on acute lymphoblastic leukmeia (recruitment to start shortly) under its umbrella are exciting developments. More on this in the future.

Friday 30 October 2015

When a child is dying

Despite the progress made in curing children with cancer, we do have children who are not able to get cured. Second-line, third-line, fourth-line, ...., treatment options are available, but the chances of success and cure get slimmer with each extra round of treatment. And, the side-effects add up, the visits to the hospital, the extra costs, it becomes a downward spiral. A time comes in this quest for cure that treatment (and its side effects) are no longer acceptable. This time varies depending on the child, the family, the treating doctor, the cancer, the side-effect, the socio-economic cost and many such factors. There are no easy answers and each child and each situation is different. Earlier this week I came across this story of a 5 year old girl in the US with a progressive neurological disorder. It is in two parts and does make me emotional, both as a doctor and as a parent.
I have recently had a child who died after a long battle with her cancer. I have another where the chances of cure are close to zero. At these times, the relationship which one has built with the parents and the child is of utmost importance. What I have realised in my experience is that having a constant and honest dialogue with the family and involving the child where appropriate helps. Just by being there, whether in person, or at the other end of the phone is a relief for families.

Friday 16 January 2015

Training Opportunities in Paediatric Oncology

Wish you all a very Happy New Year. As always, at the beginning of each year, I make several resolutions, one of which includes posting on the blog more regularly. This year, over the next few posts, I would like to share with you some national and international collaborative efforts to try and improve the lives of our children with cancer.

Education and training are fundamental to delivering good care to our children with cancer. This need not (and should not) only be a single opportunity but an ongoing effort of continuously updating ourselves. For various reasons, including lack of appropriate opportunities and resources, health professionals in low and middle income countries have been limited in accessing education and training. Internet has gone a long way in addressing this limited access - an excellent example being the volumes and volumes of educational material available for free on the website www.cure4kids.org.

Now the SIOP PODC Education and Training Working Group have initiated a bold and exciting idea of developing a repository of training in paediatric oncology clinical medicine or research intended for health care workers from resource-limited countries https://sites.google.com/site/sioptrainingopportunities/home. Each training opportunity is classified by country as well as by the category of opportunity e.g. nurse training, nutrition training, paediatric oncology fellowship, cancer research, etc. My congratulations to Jeremy and Jaime and Neil for the stellar effort.

Finally, and very importantly, such an initiative can only succeed if we spread the word about such a resource and also submit any such training opportunity we know of, however big or small by clicking on this link