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A Model Strategy for Developing Countries

We are working with doctors in Kenya to develop a national retinoblastoma strategy that will serve the country and wider region, and become a model for adaptation and implrementation in diverse resource-poor settings.,

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Although 96% of children treated for retinoblastoma in developed countries survive today, 92% of affected children

live in economically less developed countries.  The table below illustrates the vast differences between resource-rich and resource-poor counrties, where retinoblastoma survival is less than 50%, and may be less than 10% in some countries.

Due to high birth rates across the continent, nearly 2,000 children develop retinoblastoma each year in Africa, and almost half of those children live in eleven countries constituting East Africa (Tanzania, DR Congo, Rwanda, Burundi, Uganda, Kenya, Somalia, Ethiopia, Eritrea, Djibouti and Sudan).  This compares to 280 new diagnoses in the USA, 45 in the UK and 24 in Canada. The majority of children in developing countries are diagnosed at an advanced stage, and many die before diagnosis.  Most advanced and fatal cases are observed in rural, underprivileged communities.  Effective life-saving therapy is already available in most of these countries.  However, access to this vital care is frequently denied, delayed or incomplete due to poor cancer awareness among families and primary health care workers, lack of access to informed health care providers, sub-optimal application of available resources, and lack of support for affected families.  Treatment of curable children is often refused or abandoned by families due to the financial burden of mounting transport and accommodation costs, fear of mutilation from curative eye removal) surgery, lack of family support services and inadequate provision of information from which families can make informed decisions about the child’s care. Simple changes can dramatically improve survival and vision-saving opportunities for many of these children.  With this in mind, we are currently working with medical professionals, families, survivors and other stakeholders in East Africa to build  a sustainable National Retinoblastoma Strategy NRbS) in Kenya, capable of effectively caring for children and their families across the country and the wider East Africa region.   The Model National Strategy for Developing Countries involves; Systemic awareness campaigns targeting parents and health care workers, highlighting “white pupil” as an early sign of retinoblastoma, to acheive early diagnosis and promot referral. Best practice guidelines to provide clear definitions for accurate clinical diagnosis, and agreed, evidence-based standards of care throughout treatment and follow-up. A Retinoblastoma centre of excellence, working together with a series of designated retinoblastoma satellite centres across the country. Centralised expert pathological examination of removed eyes, to accurately identify children at risk of recurrence, enable appropriate post-operative care, and make best use of available resources. A National registry to support patient record keeping, create new opportunities for follow-up care, and monitor impact of the strategy. Child life initiatives to augment care of young children during treatment, and potentially reduce certain associated medical costs. Family support programs to ensure children are able to complete treatment and follow-up.  These include access to educational resources, accommodation, transport, and psycho-social support. An organised approach to retinoblastoma care in developing countries can significantly improve life/vision survival rates.  National strategies will also reduce expenditure on unnecessary therapies resulting from delayed diagnosis and mismanagement of medical care. The national retinoblastoma strategy in Kenya will support a number of United Nations Millennium Development Goals, such as access to health care and education.  Many goals set out in the Charter of Paris would also be realised.  The Charter, adopted at the 2000 World Summit Against Cancer for the New Millennium, recognises that: “Currently achievable improvements in cancer survival remain unrealized, due to…unequal access to quality cancer care.” “Lives can and will be saved by increased access to existing technologies.”  “Clinical outcomes can be affected by the overall state of a patient's mental and physical well being, so the preservation of quality of life -- including physical, psychological and social functioning -- should be a humanitarian priority.” Read more about our model strategy in our "Rati's Challenge - Rb care in Africa" section

Find out more about the other three projects of the Global Retinoblastoma Strategy           Best Practice Guidelines           World Registry           World Retinoblastoma Research Group

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