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Awareness Campaigns

The majority of children with retinoblastoma in Africa are diagnosed at an advanced stage, and many children may die before diagnosis.  Most advanced and fatal cases are observed in rural, underprivileged communities.

The main causes of late diagnosis are Widespread illiteracy Near absent awareness of “white pupil” as an early sign of retinoblastoma.

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Lack of access to health care information Poorly informed health care providers (primary care doctors, paediatricians, ophthalmologists, oncologists). Poverty leading to the principal use of traditional medicines. Transport costs and lack of family accommodation preventing access to care.

Early diagnosis is essential for survival of retinoblastoma.  When cancer is contained within the eye, surgical removal of that eye is curative.  However, the intensive therapy required for treatment of extensive retinoblastoma places considerable burdens on the family and health care system, with generally unfavourable results.  When early diagnosis is achieved, the costs of medical care are significantly lower, thus reducing the burden on the family and the local health care system. The most common early sign of retinoblastoma, a white pupil (leukocoria), can be easily detected by the general public.  Early diagnosis requires that: Parents and primary health care workers recognise this sign.  Prompt referral is made to an ophthalmologist familiar with retinoblastoma, to ensure complete diagnosis and appropriate management. Pilot Campaign We have already carried out a pilot Retinoblastoma Awareness Campaign in Kenya, targeting both medical personnel and the public. In 2006, a DECF team from Canada, the U.K. Ethiopia and Kenya found tremendous local interest in a T-shirt and poster campaign highlighting the “white pupil” in early diagnosis of retinoblastoma.  Structured Campaigns We are now developing structured awareness campaigns, to target both the public and health care workers.  These will include: Dissemination of educational posters to primary health centres, to promote knowledge and awareness among primary health providers. Circulation of parental education postcards during national infant vaccination campaigns, since most cases of retinoblastoma arise in this age group.  The principal Information will be presented in a pictorial format, to overcome the challenge of illiteracy in Kenya.  Public service announcements in the media Educational seminars during appropriate continuing medical education events To assess impact on early diagnosis and referral, we will initiate a retrospective study of children diagnosed and treated prior to start of the campaign.  This data will be compared to data collected by the national registry during the campaign.  This will enable us to identify changes in the stage of disease and age of children at diagnosis, and the lag time between first sign of disease and eventual diagnosis / initiation of therapy The awareness campaigns will: Educate local medical professionals and general public on detection of the “white pupil” as an early sign of retinoblastoma. Achieve earlier detection of retinoblastoma in the home and clinic, before it progresses beyond the eye. Reduce mortality caused by late diagnosis. Possibly decrease public misconceptions and stigma associated with removal of an eye. Early diagnosis is a child’s only hope of cure in Africa.  These simple awareness raising strategies can dramatically reduce the tragic loss of precious children, and bring hope for their future as happy, healthy individuals.

Rati's Challenge          Kenyan Rb Strategy          Guidelines National Registry          Awareness Raising          Co-ordinated Care Child Life Support          Family Support          Artificial Eye Service

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