Following up children who have been treated for cancer, is very important. If we do not know their status at one month or one year after completion of treatment, we cannot calculate the survival rate for our children. We would be unable to publish or present any results of our work.
Follow-up of child cancer cases in Africa has always been a problem. The following quotation comes from a biography of Burkitt:
‘…we sent Mr Aloyisius Kisuule to find patients who hadn’t reported back to the hospital – about eighty altogether. He found seventy-seven of them. We wanted to find a boy who’d given his address as Msambya Hill, two miles outside Kampala. Aloyisius couldn’t find the boy there, so he simply sat down on a convenient spot, and whenever anybody passed, he’d ask if they had seen a boy with a swollen jaw. After he’d sat there for a week, a passer-by remembered the boy, and Aloyisius tracked him down to a place called Kimuli, ninety miles away… This is cancer research, and this benefits humanity at large.’
The Long Safari; Bernard Glemser, 1971; The Bodley Head.
It has been a fundamental premise of BTMAT that we will do all in our power to keep in touch with children treated in our projects.
Making home visits to defaulting children is time-consuming and difficult, and during the rainy season may be impossible. Furthermore, on reaching the distant rural homes, one is not surprised that the children were not brought back to the hospital for re-assessment.
Distances to be covered can be great; we have covered 400km in one day – starting very early in the morning, and returning close to midnight. We had the use of a hospital 4×4 and hospital driver in order to cope with rough tracks through the bush. Such journeys were difficult for us, let alone the poor parents of the sick children. On finding our children we were always unsurprised that they had not returned to the hospital for follow-up. Indeed, it was remarkable that they had even come in the first instance.
We can blame people in the developed world for failing to keep appointments; they have good roads, motor cars, good communications, closeness to the hospital, and no shortage of funds. None of this obtains in sub-Saharan Africa. We can never blame parents for failing to return with their children.
In recent years, the expression ‘Abandonment’ has been applied by workers in child cancer in the resource-poor world. If the abandoning is by the parents, this is judgmental, and as such – deplorable. If the abandoning is by the medical team failing to retrieve their patients, this may at worst be regarded as failure of duty, and at best resignation in the face of difficulty. Either way this is also deplorable.
Our own follow-up rate is about 90%. Achieving this is expensive; hiring the hospital vehicle and driver has a cost implication. We are not satisfied with 90%, and we are ever searching for new ways of reaching 100% retrieval of our treated children.