If found early, childhood eye cancer is curable with highly specialised medical care.
Lack of nationally co-ordinated retinoblastoma care places great burdens on families and health systems, prevents efficient use of available resources, and causes children to die or lose eyes needlessly. We have introduced nationally agreed guidelines, pathology, treatment, patient records, imaging and artificial eyes that give each child vital personalized care.
Treatment of retinoblastoma frequently fails to achieve best possible outcome for the child and family due to lack of clearly defined management plans.
This happens in most countries worldwide, regardless of economic development or available resources, but it is a particular challenge in developing countries.
Management of retinoblastoma includes referral, screening and diagnosis, staging, treatment, genetic testing, follow up care and psychosocial supports.
Using the Canadian Retinoblastoma Guidelines as a model, the KNRbS group has developed Best Practice Guidelines appropriate for the resource-limited setting. Agreed, evidence-based recommendations enable common standards of care for children and families across Kenya; from referral and diagnosis through treatment and follow-up.
The guidelines were developed collaboratively over five years. Annual meetings of the Kenyan National Rb Strategy Group facilitated consensus agreement and comprehensive national ownership. Our international team provided knowledge and expertise in guideline writing to facilitate appropriate editing and formulation of the Kenyan document.
The Kenyan National Retinoblastoma Care Guidelines were adopted by the government in September 2014 and their recommendations are now being implemented across the country.
Over the coming years, our team in Kenya and internationally will follow a comprehensive review process to ensure each of the guideline recommendations is being implemented effectively and positively impacting children, their families, survivors and those who care for them.
Impact of Guidelines
Kenya’s nationally co-ordinated approach to retinoblastoma is improving access to vital medical care. Medical professionals are better equipped to provide optimal care for children and their families. This is relieving pressure on limited medical resources. Many of the financial, physical and social burdens that have crippled families are already significantly reducing, and some may be eliminated completely in the coming years. Ultimately, many more children will overcome their cancer.
Removing an eye filled with cancer offers the best chance of saving the child’s life. Promptly after surgery, the eye must be carefully examined under a microscope to guide post-operative care.
In Africa, pathology reports are frequently delayed by more than three months because labs are over-stretched. Limited expertise in eye pathology results in failure to provide the crucial information doctors need to determine appropriate care for the individual child.
Delayed and incomplete pathology reports obstruct effective use of limited medical resources. Some children receive chemotherapy who may be cured by surgery alone, while others who need more treatment to save their life are sent home with none. This leads to poor outcomes for curable children.
We have established the Retinoblastoma Collaborative Laboratory (RbCoLab) at the University of Nairobi to compliment existing general pathology services. The RbCoLab provides specialist training of general pathologists and technicians, as well as expert review and accurate reports that guide post-operative care for every child.
funded comprehensive training (ocular pathology fellowship) in Canada for the RbCoLab lead pathologist, Dr. Elizabeth Dimba;
developed a standard Rb pathology request and reporting form to capture all information required by both the pathologist and ophthalmologist;
replaced the university’s antiquated microtome (essential pathology lab equipment), enabling a safe, effective working environment;
negotiated fifteen years of free pathology consultation for children with Rb;
developed a courier protocol (including funding) for rapid shipment of eyes from anywhere in Kenya to the RbCoLab.
reduced turn-around-time to less than two weeks;
donated a specialist scanner and software package in partnership with Aurora and Bioimigene, to enable internet-based consultations and training.
We now provide comprehensive pathology for children with eye cancer for just £5 / US$7.50 per eye.
Impact of the RbCoLab
The RbCoLab and low cost service significantly reduces family burdens and improves care for each child by rapidly identifying their true risk and need for further treatment. When pathology confirms no risk factors for disease beyond the eye, no further treatment is necessary, and the child moves to close follow up care. When pathology establishes a high risk of relapse, chemotherapy is given immediately to kill cancer cells before they threaten the child’s life.
Telemedicine capabilities at the RbCoLab enable collaborative consultation and training across Kenya and beyond, when there is no expertise in eye pathology. Local pathologists and doctors can participate by viewing annotated high resolution images of the child’s eye pathology via the internet, deepening their understanding of their patient’s cancer and post-surgery needs.
Widely available internet access is increasing parents’ awareness of alternatives to eye removal surgery, and demand for vision saving therapy in Africa is increasing. . Many children lose eyes that could have been saved because affordable specialist treatment is not available close to home.
Chemotherapy is vital to protect the child’s life when there is a high risk of cancer spread beyond the eye. When cure is not possible, chemotherapy can dramatically improve the child’s comfort, dignity and quality of life. However, limited access to retinoblastoma specific chemotherapy means many children who could be saved have little hope of cure, and children die in terrible pain.
Life saving and palliative chemotherapy: We have developed retinoblastoma-specific chemotherapy protocols for children requiring post-operative treatment or when cure is not possible. We have supported their introduction to Kenyatta National Hospital (Nairobi) and Moi Teaching and Referral Hospital (Eldoret).
We are helping Coast Provincial Hospital (Mombasa) develop a paediatric oncology program that can support life-saving and palliative chemotherapy for retinoblastoma and several other childhood cancers. Most important to this program is specialist paediatric oncology training for a paediatrician and paediatric nurse, and a reliable supply of key drugs at an affordable price.
Sight saving therapy: Saving the sight of a child with retinoblastoma involves highly specialised therapy over many months or years. Our team at Kenyatta National Hospital (Nairobi) are implementing a protocol to save children’s eyes when tumours are small. The international protocol is adapted slightly to accommodate Kenya’s limited resources. Treatment involves three chemotherapy drugs given in combination with laser and cryotherapy (freezing) directly to the affected eye/s. We:
are working with hospital pharmacists and suppliers to secure regular, reliable supply of the essential chemotherapy drugs at an affordable cost;
have donated a RetcamTM Shuttle in partnership with ORBIS to support best possible care for each child and specialist training in eye-salvage therapy;
donated eCancerCareRB to improve patient records and care tracking.
Impact of Improved Treatment
Retinoblastoma specific treatment protocols are improving outcomes for children with small tumours and extensive cancer. Bringing chemotherapy to Mombasa will also dramatically improve chances of cure for children from eastern Kenya who struggle to access care far away in Nairobi.
Patient records in Africa are often missing vital information such as contact details, test results and detailed medical reports. Prose reports often lack information necessary to guide the next steps in the patient’s care. Paper files for children with cancer become large and difficult to manage, and key information may be missed upon review. Poor quality paper and ink often degrades over time, causing difficulty in reviewing the documents.
Inconsistent, incomplete medical records prevent effective management of children with retinoblastoma. This also hinders the high quality research necessary to better understand local needs and develop best possible care.
We have introduced a point-of-care database to store and track patient records. eCancerCareRB follows patients through diagnosis, treatment and follow-up.
Eyes are automaically staged (TNM and IIRC) when tumour features are recorded on a simple form.
Detailed information about each eye exam and treatment can be added and viewed with one click.
A visual timeline summarizes treatment for each eye.
RetcamTM images can be added and quickly compared to assess tumour response to treatment.
Records are held on a secure central server that can be accessed via the internet, aiding follow up of children beyond treatment.
Anonymous information can be generated to support research.
adapted eCancerCareRB for the resource limited setting, particularly to capture additional demographic information that will help us identify needs and monitor impact of various programs;
donated a secure server to host eCancerCareRB; and
trained clinicians and data managers in Nairobi, Eldoret and Mombasa to use eCancerCareRB.
We continue to support the integration and use of eCancerCareRB within existing care structures. We are also exploring strategies to harness cellular technology for eCancerCareRB, particularly to enhance essential follow-up care for children living in rural Kenya.
Impact of eCancerCareRB
eCancerCareRB is radically improving patient record keeping, and this will enhance care of individual children. Better record keeping will also aid research, helping us to identify specific needs, assess treatments and fully evaluate the national retinoblastoma strategy. Ultimately, this will lead to better outcomes for children and their families.
Currently, many parents delay essential eye removal surgery while searching for alternative treatments. Widely available internet access leads families to knowledge of eye-salvage therapies, and many seek care overseas. Children who were previously curable die as a result of delayed treatment.
As awareness of retinoblastoma grows and children are diagnosed earlier, the demand for high quality eye saving therapy in Africa will increase. Delivering this kind of care requires specialist imaging equipment and training, and international consultation for individual children.
In 2009, in partnership with ORBIS, we donated a Retcam™ Shuttle to enable eye examination and treatment, online consultation and training. The RetcamTM is designed specifically for retinal photography, and has revolutionized retinoblastoma care around the world.
When used correctly, the entire retina can be viewed, photographed and videoed during an EUA. High resolution images appear in real time on a computer screen. The medical team can work together to meticulously search for small early tumours or changes to existing lesions. Images can be stored for review and comparison using sophisticated tracking software.
The RetcamTM views eyes slightly differently to the indirect ophthalmoscope, and can detect changes invisible on traditional examination. The RetcamTM can also be used to view a tumour during laser or cryotherapy treatment.
The RetcamTM supports rapid online consultation with retinoblastoma specialists around the world, facilitating ongoing training of local ophthalmologists and eliminating the need for children to travel thousands of miles for expensive second opinions.
Impact of the RetcamTM
The Retcam™ Shuttle has dramatically improved opportunities for children who have traditionally faced complete and irreversible blindness, and even death.
As high resolution images can be reviewed on-screen and printed, doctors can now show parents what retinoblastoma looks like inside their child’s eye. This helps them better understand the cancer and accept recommended care.
The fully portable camera is based at Kenyatta National Hospital in Nairobi. As early diagnosis increases and programs in Eldoret and Mombasa develop, we envisage the camera rotating between centres on a regular schedule. This will bring opportunities for sight-saving care to children without the burdens associated with travelling to Nairobi.
This sophisticated camera is a standard tool for retinoblastoma care in developed countries, but our donation was the first Retcam™ in Africa. This marks a major step forward in developing local capacity to save the eyes of children with retinoblastoma on the continent.
An artificial eye is shaped like a portion of an eggshell, made from acrylic and painted to match the remaining eye. The eye is worn over a ball shaped implant, permanently inserted during eye removal surgery to restore the space previously occupied by the eye.
If the child does not have an artificial eye, the gap behind the eyelids shrinks over time. This causes the socket to become deformed and lose its ability to open, close and blink properly, which can cause further complications and pain.
Experienced ocularists (people who make eyes) are scarce in Africa. Poor access to artificial eyes causes preventable complications for many children. Lack of public understanding about urgent need to remove the eye causes unbearable emotional distress, and families often refuse curative surgery because of the associated stigma.
Providing artificial eyes saves lives, since some families refuse life-saving eye removal surgery due to fear and stigma associated with having no eye.
Currently, we bulk purchase eyes made in India, ordering sizes appropriate for very young children. We have established a system through which doctors in our KNRbS Group request the number and size of artificial eyes they require to replenish their stock.
The artificial eye is now placed at the time of the eye removal surgery, to reduce emotional distress experienced by the child and family.
We have produced simple resources for parents and children explaining the need for and process of eye removal and artificial eyes. They show that children remain very special, talented, intelligent and capable, without one or both eyes.
Using low-tech facilities and low-cost materials, good quality eyes can be made for £20 ($30). Long term, we hope to facilitate training and start up for a child-focused ocularist in Kenya. This will enable good eyes to be produced locally at low cost, accurately matching colour of the remaining eye, and enabling fitting and replacement of eyes as the child grows.
We also envisage a national artificial eye service helping to challenge public misconceptions and stigma associated with eye removal surgery.
Impact of Artificial Eyes
Artificial eyes are literally saving lives in Kenya. Parents now have deeper understanding of the eye removal process and can handle artificial eyes before surgery so they know what to expect. They fear less and are better able to accept the surgery without delay, improving the child’s prospect of cure.
Children who have lost an eye to cancer suffer far less emotionally. The realistic prosthetic gives them dignity, confidence and a healthy spirit when playing with other children.
Retinoblastoma in Africa can be cured. Our solutions strengthen local capacity to provide effective care, reducing the strain on financial, human and material resources.
Children have a greater chance of cure and parents have hope. Medical professionals also feel more positive and confident about treating patients with this difficult cancer and communicating with their families.