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The Global Eye Winter 2008

Snap Shot Honduras: Challenging Late Diagnosis Through Education.

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Abby White, with Ligia Fu MD (Hospital Escuela, Honduras) and Carlos Rodriguez-Galindo MD (St Jude Children's Hospital, USA).

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Survival of retinoblastoma varies greatly between developed and developing countries.  More than 95% of children are cured in developed countries, where most tumours are confined to the eye at diagnosis.  In contrast, most children with retinoblastoma in developing countries are diagnosed at an advanced stage, and survival is less than 50%.  While retinoblastoma contained fully within the eye is curable by surgical removal of that affected eye, tumours that have spread beyond the eye are almost always fatal in developing countries. Late diagnosis of retinoblastoma is clearly a major barrier to survival in developing countries, but a recent

study has demonstrated that simple retinoblastoma education campaigns can have a significant impact on early diagnosis in resource-limited settings. Honduras is among the 5 poorest countries in the Western Hemisphere, with a Gross National Income per capita in 2005 of US$1,190 (compared with US$43,740 in the USA).  Agriculture (mainly bananas, coffee, tobacco and corn) is the bedrock of the economy in this mountainous, rainforest clad Central American country.  In 2004, 24% of Honduras’ 7,200,000 residents lived below US$1 per day, and for every 1,000 people, there were just 80 cars, 16 telephones and 3 internet users.  In the capital city, Tegucigalpa, Hospital Escuela Materno Infantil  provides retinoblastoma care through the country’s only Paediatric Oncology Unit.  Unilateral retinoblastoma confined to the eye is treated with enucleation, and well trained doctors use focal therapy, chemotherapy and radiation to avoid enucleation of bilaterally affected children whose cancer has not spread beyond the eyes.  However, many patients arrive at the hospital with advanced disease, due to delayed diagnosis, and this  substantially hinders survival. The most common early sign of retinoblastoma, a white pupil (leukocoria), can be easily detected by the general public.  In order to achieve early diagnosis, parents and primary health care workers must be able to recognise this sign.  Prompt referral to an ophthalmologist familiar with retinoblastoma must also be instituted to ensure appropriate management of the child and other relatives.

In 2003, an education campaign was launched in Honduras to raise awareness of retinoblastoma and its early signs, with the goal of improving early diagnosis.  The project was a collaborative effort between the Paediatric Oncology Unit at Hospital Escuela in Tegucigalpa, the International Outreach Program of St. Jude Children’s Research Hospital, the Honduran Ministry of Health, the Honduran Foundation for the Child With Cancer and UNICEF.  Funding was provided by The Honduran Ministry of Health; The Honduran Foundation for the Child With Cancer and the American Lebanese Syrian Associated Charities (ALSAC – the fund-raising organisation of St Jude Children’s Hospital).

A national infant vaccination campaign was identified as the primary vehicle through which to raise awareness of retinoblastoma.  This approach would be advantageous since more than 90% of Honduran infants and toddlers attend vaccination clinics, and most retinoblastomas arise in this age group.  Information would therefore be provided to the largest possible number of people, and health care workers would be available to help explain the material and answer questions.  Ophthalmologic screening for retinoblastoma was not possible due to the costs involved, the rarity of retinoblastoma, and inability to guarantee resources for treatment of other eye conditions.  Screening would also not eliminate future risk of developing retinal tumours.  During the annual vaccination campaign in June 2003, 1,334 government health clinics  across Honduras received educational materials to place on their walls and distribute among parents.  As 20% of the adult population cannot read, the 2,000 posters and 100,000 ?yers presented information pictorially, to overcome the challenge of illiteracy.    The gravity of retinoblastoma and white pupil were emphasised to motivate action, and a telephone number was provided to enable further enquiries. These educational resources cost just US$2,700 (approximately £1,350).  Vaccination campaign personnel were also educated about retinoblastoma and the importance of the early diagnosis, enabling them to answer questions from parents and actively support the awareness campaign.  The awareness campaign was complimented by articles about retinoblastoma on the radio and television.  Seminars were also held during an annual cancer awareness week, and at the National Medical Congress, to raise awareness of retinoblastoma among the medical community.  Further training opportunities for ophthalmologists were provided through retinoblastoma seminars and short observerships at St. Jude Children’s Research Hospital in Memphis, USA.  Finally, donation of a RetCam to the Tegucigalpa retinoblastoma program enabled optimal examination and online consultation with doctors at St Jude regarding appropriate treatment for affected children.

This national awareness campaign has been carried out every year since its inception in 2003, during the annual vaccination campaign.  This will continue indefinitely. To assess the campaign’s effectiveness, a retrospective study was undertaken of 59 retinoblastoma cases diagnosed at the Hospital Escuela Paediatric Oncology Unit during eight consecutive years preceding 2003.   Patient charts and an electronic database were used to gather anonymous data, which included sex and date of birth; date of diagnosis;  age, clinical signs/symptoms and evidence of tumour spread beyond the eye at diagnosis;  affected eyes (unilateral or.

bilateral); date and status of the patient at last contact.  For each patient, the date of the first sign or symptom was estimated from medical history taken during the initial hospital visit.  Refusal or abandonment of therapy, and loss to follow-up was also recorded.  Similar data was collected from the files of 23 children diagnosed in the 19 months post-campaign. This research found that 73% of children presented at the hospital with retinoblastoma that had spread beyond the eye by the time of initial diagnosis.  In contrast, the World Retinoblastoma Survey, conducted by Toronto’s SickKids Hospital between 1997-2001, established that only 15% of children in developed countries present with extraocular tumour involvement.  During the 19 months following initiation of the awareness campaign, only 35% of newly diagnosed children presented with extraocular tumour growth.  In the eight pre-campaign years, 54% of children presented with leukocoria, but this increased to 83% following the campaign’s introduction.  Age at diagnosis was also reduced by a median of 3.8 months, and the median time between parental observation of the first signs and diagnosis was decreased by 1.7 months.  In spite of the improvements in early diagnosis, the campaign had little impact on refusal of therapy, which increased very slightly from 7% pre-campaign to 9% post-campaign.  Abandonment of treatment also remained relatively unchanged (29% pre-campaign and 26% post-campaign).  Although treatment was abandoned in one third of cases after the campaign began, the researchers noted that most children who abandoned treatment had advanced retinoblastoma, with limited possibility of cure.  Therefore, this statistic may not accurately describe the impact of abandonment on survival.  Refusal and abandonment of therapy are major obstacles to survival, and efforts are underway to address the issues which lead to this situation.  Provision of family accommodation will decrease the burden of accessing treatment in Tegucigalpa, and development of satellite chemotherapy clinics will reduce the distance and cost of travel, and disruption to family life throughout therapy.  The impact of this campaign on survival cannot yet be effectively measured.  However, this study clearly demonstrates that the marriage of a simple, low-cost education campaign to infant vaccination programs can significantly advance early referral of suspected retinoblastoma, enabling timely diagnosis and the opportunity for optimal care.  This is a valuable primary tool in the effort to improve retinoblastoma survival in resource-limited countries, where late diagnosis and unnecessary death from this cancer is common.

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