Early diagnosis is a child’s only hope of cure in Africa. When cancer is contained in the eye, surgical removal of that eye cures the child. However, intensive therapy required for retinoblastoma that has spread outside the eye places huge burdens on the family and health care system, with very poor chance of survival.
There is little awareness of childhood cancer among the public or primary health workers in developing countries. Early diagnosis is hampered by widespread illiteracy, limited access to health information, and principal use of traditional medicines due to poverty.
As a white pupil is often the only visible sign of retinoblastoma in its early stages, most families do not seek medical care until the cancer is a severe threat to the child’s life. Stigma associated with removing an eye frequently causes parents to resist life-saving surgery, and children who are curable at diagnosis later die in terrible pain.
Untreated retinoblastoma grotesquely mutilates the child’s beautiful young face, causing intolerable physical and mental suffering that is entirely preventable.
We have developed a national campaign to educate the public and primary health care workers about retinoblastoma. We focus on the most common early sign, a white pupil seen in dim light and flash photography, and the need for eye removal surgery to save children’s lives. We have:
- included “white pupil” information in the Mother & Child Health booklet, compiled and distributed by the Ministry of Health to all health centres and parents across the country;
- sent educational posters to every mother and child heath clinic and immunisation centre in the country, in partnership with the Ministry of Health;
- secured prominent media coverage (print, TV and radio) of retinoblastoma, featuring children’s stories and interviews with doctors, nurses, parents and survivors; and
- organized annual educational seminars during continuing medical education events, to inform medical professionals about eye cancer in children.
Impact of Raising Awareness
These simple strategies are helping to detect retinoblastoma in the home and clinic, before cancer spreads outside the eye. Earlier diagnosis and less public stigma will dramatically increase a child’s chances of cure and prevent the great suffering caused by advanced disease. Treatment costs will also be significantly lower, reducing financial burden on the family and health care system.
Before launching our awareness initiatives, we gathered information about the age, stage of disease at diagnosis and referral process for all children diagnosed in Kenya between January 2007 and December 2008. We will compare this data with the same information collected from patients diagnosed since the campaign began in 2009-2010, to assess impact after at least five years of awareness raising activities.
As this cancer affects only very young children, we expect the next phase of research to show a decrease in average age at diagnosis, as well as stage of disease and time to referral and treatment.