The prognosis of patients in this Ugandan study population was very poor, and much lower for almost all forms of cancer than the prognosis of patients in the United States or other developed countries. These survival figures are even lower than most previously published survival estimates from other developing countries (Sankaranarayanan et al, 1998
). In particular, Ugandan patients with nasopharyngeal, colorectal, ovarian, and thyroid cancer experience much lower survival than patients in other, non-African developing countries. The very low survival estimates for patients with oesophageal, stomach, liver, and lung cancer are similar to those observed in other developing countries, but survival from these cancers is generally poor all over the world. The survival of patients with breast or prostate cancer and lymphomas was similar to that observed in other developing countries.
Although shocking, these survival estimates are unfortunately not surprising. Uganda is a very poor country: annual per capita health expenditure is currently estimated at only 36 dollars (WHOSIS, 2000
), and 40% of the population live in absolute poverty (living on less than 1$ a day and unable to afford enough food to consume 2000–3000 calories a day) (Kikule, 2003
). Given the constraints posed by the limited resources, the availability of cancer care may depend on the patient's financial contribution. At the same time, there is a lack of resources at every level of cancer care. In 1998, there were only two radiotherapy units and one chemotherapy unit in the country, and only an estimated 5% of patients had access to these facilities. Further constraints are posed by the lack of medical personnel: in Kampala, there are only approximately 50 doctors per 100
000 people (USA: 279) (WHOSIS, 1998
; Merriman, 1999
; Merriman and Heller, 2002
). In 1993, a hospice service was started in Kampala to provide mainly home based palliative care for cancer and AIDS patients. The hospice services, which are never refused if a patient is unable to contribute to the cost of the service (Merriman and Heller, 2002
), are probably the most widely utilised cancer services in the study area. The hospice service, which provided 20% of the vital status information in this study, is a great success and functions as a model for other African countries wishing to set up a patient-oriented hospice service (Merriman and Heller, 2002
Completeness and accuracy of the data are always of concern in registry studies of survival, and particularly so in those from developing countries (Sankaranarayanan et al, 1998
). In Kampala, the collection of follow-up data was particularly challenging and difficult, as described in detail in the methods section. As a result, a large proportion of patients could not be included or were lost to follow-up before study closure. This gives rise to concern that the survival estimates may be biased. However, although the vital status of lost-to-follow-up patients is unknown, the study personnel managed on many occasions to acquire some information about these patients from different sources, such as neighbours, landlords, etc. According to these notes, many of them went ‘up-country', most probably back to their own community. The fact that these patients were not recorded at any health institution means that they are most probably not getting any treatment because specialised treatment is not available outside Kampala. Furthermore, it has been documented that in the Ugandan context patients prefer to be at home and be cared for by their families when they are ill. Patients are usually discharged from the hospital when they can not be helped any more, and they prefer to go home as people are customarily buried in their family village when they die (Kikule, 2003
). It is therefore unlikely that patients who were lost-to-follow-up had had a much higher survival than patients with completed follow-up. Furthermore, the effect of loss to follow-up on population-based survival estimates in developing county settings has been previously assessed and was found to be marginal, even when lost to follow-up proportions were high (30–40%) and nonrandom with regard to prognostic factors (Swaminathan et al, 2002
; Sriamporn et al, 2004
). Therefore, it is reasonable to suppose that despite considerable exclusion and lost to follow-up, our results are free from a meaningful bias and adequately reflect the true survival experience of cancer patients in Uganda.
Stage is often considered to be the most important factor determining survival. Unfortunately, only sporadic information was available on this factor in our data set. However, it is commonly believed that stage at diagnosis is advanced in Africa for many cancers (Parkin et al, 2003
), and as screening and education programmes are almost nonexistent, there is little reason to believe that this observation is not correct. Given that more than 60% of deaths occurred within the first year after diagnosis, and about 80% of deaths occurred within the first 2 years after diagnosis in this study population, it seems reasonable to assume that many of these patients were only diagnosed very late, when effective treatment is rarely possible.
In conclusion, the survival of cancer patients in Uganda is very poor and in its totality worse than that was reported from other non-African developing countries. Despite the challenging context and the discussed limitations, we are convinced that the data collected and the results are consistent with the described health care realities and accurately reflect the state of cancer management in Uganda today. Cancer management faces an enormous task in the country, and should be focused on those cancers, which pose the largest burden on the population, that may be prevented, or screened for comparatively easily, and for which deliverable treatment promises with positive outcome.
On the policy level, the results underscore the importance of the consistent application of the national cancer control programme guidelines as outlined by the WHO (WHO, 2002
). In addition, ongoing efforts should be continued to increase the availability of the very successful hospice services, particularly in the rural areas of the country.