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A Need ForCo-ordinated Care

Effective life-saving retinoblastoma therapy is already available across Kenya (surgical removal of affected eyes), and vision saving therapies are also available at Kenyatta National Referral Hospital in Nairobi (chemotherapy combined with focal laser and freezing therapies).

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Sadly, delayed and incomplete pathology reports leads to sub-optimal application of available resources, and lack of nationally co-ordinated care substantially reduces chances of survival.

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Retinoblastoma Pathology Service In order to rule out metastatic disease, physicians must be sure there is no tumour spread into the optic nerve or outer layers of the eye.  When surgical pathology confirms no risk factors for disease beyond the eye, no further treatment is necessary. However, pathology reports in Kenya are frequently delayed and confirm only that the pathological findings are consistent with retinoblastoma.  The results of this are:

reports indicating no risk for extraocular involvement are rarely trusted; great pressure is placed on doctors to further treat children on the basis that they might have tumour extension beyond the eye; and children presenting with disease contained in the eye may be over-treated.

The most impoverished children are admitted into hospital in order to ensure complience with therapy, denying them a free childhood and positive family environment in which to grow.  58% of Kenya’s population earns less than US$2 per day, and many families are crippled by rising medical bills.  As children are often not released from hospital until payment is received, abandonment of treatment and child is common. We therefore recognise development of retinoblastoma pathology as a major priority within the Kenyan Retinoblastoma Strategy. We are working with the Maxillofacial Pathology Unit at the University of Nairobi School of Dental Science to establish a centralized National Retinoblastoma Diagnostic Service. This program will compliment existing general pathology, achieving expert review and accurate reporting in a timely manner for every child. We have: facilitated comprehensive ocular pathology training for Dr. Elizabeth Dimba, lead pathologist within the Maxilofacial pathology team; replaced the University’s antiquated microtome (an essential piece of pathology lab equipment), enabling a safer and more effective working environment for the retinoblastoma pathologists; and  negotiated fifteen years of free retinoblastoma pathology for children in Kenya. Except for provision of the microtome, we are working with resources already available in Kenya.  This service will set a standard pathology report turn-around-time (TAT) or less than two weeks from enucleation surgery. The centralised pathology service will promptly identify and report tumour spread beyond the eye and risk factors for recurrence, to enable optimal post-operative care; eliminate inappropriate over-treatment, thus reducing burdens placed on families whose children do not require further therapy, or who will not benefit from further intensive treatment; preserve vital resources for the children genuinely at risk due to extra-ocular extension of their cancer; and create opportunities for ocular pathology training in Nairobi for pathologists from across Kenya and other African countries. A nationally co-ordinated care program Poverty prevents many families from accessing specialist retinoblastoma care in Nairobi, and the majority of children receive treatment at regional hospitals.  However, care at these centres is limited by local knowledge of retinoblastoma, and only restricted channels through which to share skills and resources.  Collaboration between different treatment centres is limited by pressure on overstretched staff, poor communication systems and lack of administrative support.  High cost of travel, compared to low physician salaries, also renders specialist conferences inaccessible to most physicians.  This has led to critical gaps in knowledge, and lack of opportunity to advance professional development. Our co-ordinated approach to the management of retinoblastoma has many elements: National Strategy Meetings: We are assisting with the cost and planning of annual KNRbS meetings to facilitate its development, and to provide opportunities for professional development.  These meetings promote local creativity and innovation, maximizing Kenyan owned efforts and collaborative approaches. Daisy’s Eye Cancer Fund Kenya is providing  accommodation and travel bursaries to enable universal participation in these meetings.  The first meeting was held September 19-21 2008 in Athi River, Kenya. Education Materials: We are collaborating with local physicians on the development of professional education literature concerning retinoblastoma that is appropriate for the resource-limited setting.  Education will empower physicians in Kenya to take a more active leading role in the growth of effective patient management. Retinoblastoma Specific Chemotherapy: We are pursuing a co-ordinated effort to obtain appropriate chemotherapy and supportive drugs at affordable cost, to enable the use of internationally recognised retinoblastoma chemotherapy protocols.  Specialist Centres: We have identified three centres to be developed as retinoblastoma referral hospitals.  Kenyatta National Hospital (Nairobi) will become the major referral hub, supported by Moi Teaching and Referral Hospital in Eldoret, and Coast Provincial Hospital in Mombasa.  Efforts to build comprehensive local treatment capacity will be focused at these three sites over the next five years. Twinning: We are providing administrative support for twinning of Kenya’s treatment hub, Kenyatta National Hospital in Nairobi, with Canada’s principal treatment centre at The Hospital for Sick Children in Toronto. As the KNRbS develops, we will: Develop an educational and consultative Kenyan Internet Tumour Board.  This will assist in achieving optimal use of available resources, and realistic selection of treatment. Send skilled volunteers to Kenya to work with local physicians and health teams in the management of retinoblastoma.  This training will expand the use resources already available in Kenya to save eyes, and optimise the value of chemotherapy.. Provide administrative support to make limited specialist resources more widely accessible.   This may include development of a monthly mobile clinic to take technologies currently available only in Nairobi, to three satellite centres across the country. Through a nationally co-ordinated approach to retinoblastoma, many more children will have access to vital therapy.  Physicians will also be better equipped to provide optimal care for their patients.  As a result, survival will increase, and many of the burdens currently experienced by families will be significantly reduced or eliminated.

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