RATI S CHALLENGE - The Hospital for Sick Children international/19475-ratischallenge2c... ·...

RATI’S CHALLENGE:

HOPE FOR AFRICA

Building capacity for a local, sustainable, retinoblastoma healthcare program in Kenya.

November 6-27, 2007Report Date: May 14, 2008

Abby White, Oxford, UKBrenda Gallie, Toronto, Canada

Morgan Livingstone, Toronto, Canada

................................................................................................................Acknowledgements 3..................................................................................................................About the Authors 5

...................................................................................................................................Preface 6............................................................................................................................Introduction 7

............................................................................Rati’s Challenge: Retinoblastoma in Africa 9.............................................................................Tour of Kenyan Retinoblastoma Centres 12

....................................................................................................Wednesday 07/11/2007 12........................................................................................................Thursday 08/11/2007 13

.............................................................................................................Friday 09/11/2007 17..........................................................................................................Monday 12/11/2007 20.........................................................................................................Tuesday 13/11/2007 21........................................................................................................Thursday 15/11/2007 22

.............................................................................................................Friday 16/11/2007 24........................................................................................................Saturday 17/11/2007 25

..........................................................................................................Monday 19/11/2007 25.........................................................................................................Tuesday 20/11/2007 26

................................................................................November 21/11/2007 to 25/11/2007 27........................................................................................................Thursday 22/11/2007 28

..........................................................................................................Monday 26/11/2007 29........................................................................Summary of Retinoblastoma Care in Kenya 30

........................................................................................................................Awareness 30.....................................................................................................Referral and Diagnosis 31......................................................................................................Care of at risk children 31

..........................................................................................................................Treatment 32...........................................................................................................................Child Life 33..........................................................................................................................Follow-up 34

..................................................................................................................Family Support 34................................................................................................Strengths and Opportunities 36

..................................................................The Kenyan National Retinoblastoma Strategy: 37........................................................................................A Model for Retinoblastoma Care 37

....................................................................................................Achieving Global Goals 38..........................................................................................Awareness of Retinoblastoma 38

...........................................................Coordination of Care for Retinoblastoma Children 40..................................................................................................Best Practice Guidelines 41...................................................................................................Retinoblastoma Registry 42

...........................................................Child Life / Child And Family Focused Healthcare 43..................................................................................................................Family Support 45

...........................................................................................................................Conclusion 48...........................................................................................................................References 49

.....................................................................................................................Contact Details 50

Rati’s Challenge Report 2007 2

ACKNOWLEDGEMENTS

Our very positive time in Kenya, and this resulting report, would not have been possible without the enthusiastic support of many people. Special thanks go to Brian Ouma Okeyo, Director of the Rati’s Challenge program in Kenya, whose tireless work prior to our arrival in Nairobi led to a seamless and remarkable visit. Along with Brian, we heartily thank Dr Melvin D’lima, Vijoo Ratansi OGW and Lucy Kimunya for their dedicated teamwork and hospitality, which has been so instrumental in nurturing the Kenyan project into a beautiful pathway of hope for children with eye cancer in Africa.

Our sincere thanks also to Teresa Beyer, who accompanied our DECF team as an ambassador from the United States. Contributing with great energy and love, Teresa has taken the story of Africa’s retinoblastoma children back to America, extending awareness and support for these children.

We offer much thanks also to Lindsay Hampton and the Blind Ball committee, who organised a fantastic fundraising event to send us on our way to Kenya. We also thank Lindsay Hampton and Helen Dimaras for their assistance in producing this Rati’s Challenge report.

Many grateful thanks are extended to Lucy Kibria for the significant donation of medical supplies, and to the community centred around Starbucks in Warren NJ, for all the child life and hygiene supplies. OxPrint and Fifth Column, who offered discounted printing of awareness posters and t-shirts that have helped already to save lives, enthusiastically supported our awareness campaign.

We also warmly thank Nour Arther and Peter Candy at Virgin Atlantic, who graciously assisted us in the transportation of the donated medical and awareness raising supplies. We also thank Christine at the Heathrow Virgin check in desk, whose interest and fervour in processing our many boxes was a wonderful encouragement as we prepared to leave for Nairobi.

Sincere thanks to William Tanui and his family for organising our transportation needs and offering warm hospitality in Nairobi. Particularly, we offer thanks for the gift of a very comfortable land cruiser at a generously reduced hire rate. Without this vehicle, our visit would have been significantly more costly and logistically challenged.

Many people within the medical community have played significant roles in helping us to build the effective team we now have in Kenya to move forward care for children and their families. Dr. Kahaki Kimani, Dr. Martin Kollmann and the original Retinoblastoma Working Group have embraced the Rati’s Challenge project with both arms. Their knowledge, guidance and optimism sculpted our time in Kenya, and helped us develop a network across the country that would quickly grow into the National Strategy Group.

We thank Dr. Dan Kiage, Chairman of the Ophthalmology Society of Eastern Africa, and OSEA members for the warm welcome we received at their meeting, and for their great interest in Rati’s Challenge. Dr. Fayaz Khan, chief ophthalmologist at Lions Sight First Eye Hospital, and Dr. Daniel Gradin, paediatric ophthalmologist at Kikuyu Eye Centre, were generous with their time during our visits to these excellent eye care facilities, and with their enthusiasm to join our efforts.

We give hearty thanks to Dr Mark Chindia (Chair), Dr John Onyango (Vice Chair), Dr Elizabeth Dimba and Alice Limo for inviting us to the Department of Oral and Maxillofacial


Surgery and Pathology, within the Faculty of Dental Sciences, University of Nairobi. The wonderful team we met there have offered exciting opportunities for development of a specialist retinoblastoma pathology service in Kenya.

Dr James Nyikal, neonatologist and Minister of Medical Services for Kenya, and Dr Festus Ilako, Primary Care Operations Manager at the African Medical Research Foundation (AMREF), both received our work with great interest, offering support and valued suggestions for future development.

We thank our contacts at the Canadian High Commission in Nairobi for their time and guidance in developing Rati’s Challenge. Blair Walker, Program Officer, Stephen Weaver, Head of Development Co-operation at the Canadian International Development Agency (CIDA), and David Mwagiru, Public Affairs Officer, have all offered valuable insight that will help to move our programs forward in Kenya.

In Eldoret, Prof. Harun Mengech, Director of Moi Teaching and Referral Hospital, whose interest in retinoblastoma and the concept of nationally co-ordinated care was much appreciated, graciously welcomed us. Dr Jorry Odede OGW, Director of hospital’s ophthalmology centre, organised an excellent and highly productive meeting with his staff, further increasing our optimism that effective vision and life-saving chemotherapy can be provided to all children in Kenya.

Our short visit to the coast was wonderfully organised by Collins Okayo and his family. We especially thank Helen and Mildred for facilitating our visit to Coast Provincial Hospital. We extend our thanks to Dr Francis Waweru’s team for a most interesting and informative visit to the hospital’s ophthalmology unit.

Dr Matende Ibrahim welcomed us to the Lighthouse for Christ Eye Centre with gusto, and we thank him for a most excellent visit. We were also greatly encouraged by his passionate response to our awareness campaign. We also thank Dr Helen Roberts for welcoming us to Kwale District Eye Centre in spite of her absence, and we especially thank Catherine Jakaiti-Ogeya, the centre’s welcoming administrator, for a very informative visit.

We thank Dr Juliana Otieno, Medical Superintendent, and Dr Fanuel Othero, Chief Ophthalmologist, for again most enthusiastically welcoming us to Nyanza Provincial Hospital in Kisumu. Many thanks also to the nursing staff on the children’s ward, and to the Hawthorne Sisters, who embraced the concept of child life as a valuable way of supporting children experiencing cancer.

Our thanks also to Glynn Holland, Director of Rallytec Motors, and Kamal Sambi, Director of Modern Furniture House for their valued support of DECF in Kenya.

Finally, we thank our superb hosts, whose support for DECF and sustaining generosity moulded our trip into a wonderful success. To Fazila and Galib Tejpar and their delightful daughters in Kisumu, to Mama Silvanus and Sarah in Eldoret, to Brian, Eva, Lucy and Rosie in Nairobi, and to the staff at Nyali Beach Resort in Mombasa, we say a very big asante sana!


Mama Silvanus’ home cooking

ABOUT THE AUTHORS

Abby White

Abby devotes 100% of her time to the goal of optimal opportunity for children and families world wide, who are affected by a rare cancer of the eye, retinoblastoma. For years, Abby has been personally “on call” for all distressed and confused families who find her through the Internet and email. Abby is a survivor of bilateral retinoblastoma. Her father was diagnosed with bilateral retinoblastoma in Nairobi, Kenya in 1946, and treated in London, England. Abby studied geography at university, with a special emphasis on development in sub-Saharan Africa. She co-founded Daisy’s Eye Cancer Fund in 2004, with the mandate to achieve constructive impact on present and future families, through novel collaborations that will build capacity to achieve health for retinoblastoma children, wherever they live. While maintaining her personal family-by-family assistance, Abby innovates and co-ordinates the organisation’s activities.

Brenda Gallie

Brenda’s research and clinical practice is focused uniquely on retinoblastoma. A professor in the University of Toronto’s Departments of Medical Biophysics, Molecular Genetics and Ophthalmology, and Senior Scientist in the Division of Applied Molecular Oncology at the Ontario Cancer Institute/Princess Margaret Hospital, she has constantly challenged the boundaries of science, to improve the lives of her young patients and their families. Her pioneering work has contributed to fundamental understanding of cancer development, and provided affordable genetic tests that save eyes and vision while eliminating unaffected infants from invasive surveillance procedures. She is Director of the Hospital for Sick Children’s Retinoblastoma Program, a collaborative team whose novel therapies have improved vision-saving opportunities for children with bilateral disease, while avoiding the risks associated with traditional radiotherapy. Frustrated by high mortality rates in resource-limited counties, and the clinical research challenges posed by this rare cancer, Brenda co-founded Daisy’s Eye Cancer Fund to help step up action for children with retinoblastoma around the world. She enthusiastically serves as the Fund’s Medical Director, transferring her extensive knowledge, expertise and innovation in the pursuit of optimal care for all affected children.

Morgan Livingstone

As a Certified Child Life Specialist and Certified Infant Massage Instructor, Morgan is an expert in child development, promoting effective coping through play, preparation, education, and self-expression activities. She provides emotional support for children and families, and encourages the optimum development of children facing a broad range of challenging experiences, particularly those related to healthcare, illness, trauma and hospitalization. Understanding that a child’s wellbeing depends on the support of the family, Morgan also provides information, support and guidance to parents, siblings, and other extended family members or caregivers. She believes strongly in educating caregivers, administrators, and the general public about children coping with illness, surviving trauma and who are under stress. She has extensive experience of resource-limited child life implementation through her work with Operation Smile, and diligently advocates for the provision of child and family friendly healthcare across the globe.


PREFACE

Cancer in children is rare, and even more rare is retinoblastoma, an eye cancer of infancy and early childhood. However, when diagnosed and treated at the first signs of presentation, survival rates approach 100% in the developed world.

In developing countries, HIV/AIDS and other infectious diseases, malnutrition and complications of childbirth burden health systems. Cancer care in general, and childhood cancer in particular, receives little attention, and survival rates for curable cancers such as retinoblastoma are often minimal.

During the 2000 World Summit Against Cancer for the New Millennium, organisations from around the world adopted the Charter of Paris, acknowledging that the majority of cancer deaths can be prevented by improving access to currently available therapies. The high retinoblastoma cure rate achieved in resource-rich countries can be equally achieved in resource-limited countries with minimal input, by building local capacity to improve diagnosis and care of affected families.

Recognising this opportunity, “Rati’s Challenge” was launched within Daisy’s Eye Cancer Fund in September 2006, to develop a novel systematic approach to the management of retinoblastoma in the resource-limited setting.

This journey began with one little girl from Africa, who set us the challenge of improving care for children like her around the world. In this second Rati’s Challenge report, we discuss our visit to Kenya in November 2007, and identify opportunities for the Kenyan National Retinoblastoma Strategy.

We discuss the treatment options already available in Nairobi, Eldoret, Kisumu and Mombasa, and identify existing strengths and opportunities in retinoblastoma care. We examine the major obstacles to optimal care for children that we have observed in Kenya, with reference to standards in resource-rich nations.

Finally, we conclude with a discussion of the goals set out for the new Kenyan National Retinoblastoma Strategy, drawing a picture of retinoblastoma care as it can be for children in East Africa and around the world.

Our model diagnosis and treatment strategy for retinoblastoma care in developing countries is only in its birthing stage, but already we have seen great commitment to the cause, and concern for these precious children who needlessly endure great suffering.

There is much that can be done to advance care for the vast majority of children with cancer in the world. We must take action now to ensure that the knowledge, support and opportunities offered to families in the developed world are made equally available to families who live in less developed regions of our world.


INTRODUCTION

In the last four decades, consistent and dedicated research has led to dramatic advances in the survival of childhood cancer in developed countries. The understanding of retinoblastoma, saving lives and sight of affected children, has been a great success story.

We now know how retinoblastoma forms and how it responds to different therapies. We can predict risk for unaffected children by identifying the genetic mutations which caused the cancer in their affected relative. More than 96% of children treated with modern therapies now survive, the majority with useful vision. Improving quality of life and psychosocial support for the affected child, their siblings and parents is becoming a priority.

However, these advances become hollow when we consider that only a small percentage of affected children in the world currently benefit from modern management of retinoblastoma.

Across the world, approximately 9,000 children develop retinoblastoma each year, and developing countries bear the greatest burden, in both numbers of affected children and severity of disease. There is little or no access to essential life and sight saving treatment for the 92% of affected children who live in low-income countries, where cancer is not yet considered a priority, in the face of major public health concerns of infectious disease, malnutrition and displacement due to war and natural disaster. Consequently, global survival of retinoblastoma is less than 20%, and may be lower than 10% in some countries.

However, in politically stable countries, where the war on infectious disease is slowly being won, the importance of cancer care is gradually increasing. Childhood cancer remains the most neglected of all cancer sub-groups, despite the fact that many children’s cancers are especially curable, with opportunities of salvaging productive lives.

Parents worldwide easily notice the most common early sign of retinoblastoma, a “white pupil”. When contained completely within the eye, the cancer is curable by surgical removal of that eye. If tumours are small enough to treat, and appropriate therapies are available, vision can also be preserved. When retinoblastoma has spread into the brain or bone marrow, intensive, costly therapies are required, usually with very poor outcome.

Improvements in retinoblastoma survival are emerging through twinning programs between centres of excellence in resource-rich nations and treatment programs in less developed countries1. However, Sub-Saharan Africa remains largely unaffected by such opportunities, and mortality from retinoblastoma across the continent is extremely high.

Daisy’s Eye Cancer Fund developed from the experiences of two little girls, one from England and one from Botswana, whose families struggled to access the vital care their children needed. Daisy lost both eyes to retinoblastoma by the age of five years, and Rati lost her life at just four years old.

When Rati died in 2006, we established “Rati’s Challenge” within Daisy’s Eye Cancer Fund, to address the discrepancies in survival experienced in resource-rich and resource-poor countries. Within our Global Retinoblastoma Strategy, Rati’s Challenge focuses on development of a sustainable model for diagnosis and treatment in the resource-limited setting, which can be easily adapted and implemented in diverse regions of the world.

In November 2006, we travelled to Western Kenya to investigate retinoblastoma care in the country, carry out a pilot awareness campaign and determine interest of the local team in developing a national strategy. We observed significant challenges for patients, parents and physicians in all areas of retinoblastoma care. However, we also discovered that


simple steps might dramatically improve for affected children and their families, the prognosis for life and vision, and quality of life. Our initial report, “Rati’s Challenge: Retinoblastoma in Africa” discusses these findings in detail2.

We are now working with medical professionals, families, survivors, community leaders, the business community and media in Kenya to develop a model national retinoblastoma strategy that is capable of effectively caring for children and their families across the country, and wider Eastern Africa region.

In November 2007, we returned to Kenya to meet with physicians, nurses and others who care for children with retinoblastoma at the country’s four main treatment centres – Nairobi, Eldoret, Kisumu and Mombasa. Our 3-week visit included medical seminars, extensive meetings with varied stakeholders and media interviews to raise awareness of retinoblastoma. We arrived in Kenya with hopes to meet stakeholders who might share our vision. The trip far exceeded our expectations as enthusiastic response of all we met led to formation of the Kenyan National Retinoblastoma Strategy Group. A unique and dedicated team is emerging that has the power to save and raise quality of lives in Kenya, and serve as a model for other countries.

Every child deserves, and has the right to access essential medical care. We must reach beyond our own rich knowledge of retinoblastoma and advanced curative therapies, to ensure that another half century does not pass before all affected children in the world have similar opportunities for cure.

Achieving optimal care for all children with retinoblastoma in resource-poor countries such as Kenya may seem like a distant mountain summit. We aim in this report to illustrate how this mountain can be easily conquered when many people climb the path in unity, through much dedicated collaborative effort, always focused on the best interests of the child.

Rati and her family enjoy the company of a little friend in Canada.


RATI’S CHALLENGE: RETINOBLASTOMA IN AFRICA

When spiders’ webs unite, they can tie up a lion - so says an old Ethiopian proverb. So too, when the world wide web of humanity unites, seemingly impossible challenges can be overcome.

“Please send prayers for our little girl Gorata”.

Those were the closing words of an email received by Abby White from a total stranger in September 2004. Two-and-a-half year old Gorata “Rati” Poonyane had lost her left eye to retinoblastoma 19 months before, but delayed diagnosis and treatment, and lack of follow-up care, led to a recurrence of the cancer in the eye socket. When Rati’s parents, John and Salome, were given little hope of cure in their home country of Botswana, they used the Internet to seek prayers and advice.Abby immediately responded, using her contacts in the worldwide retinoblastoma community to secure help for the sprightly little girl at Toronto’s Hospital for Sick Children (SickKids). The family of Daisy, a retinoblastoma survivor, pledged vital funds to fly mother and daughter to Canada. Daisy had also received pioneering treatment at SickKids when all options to save her remaining eye failed in England. Expert care at SickKids gave Rati the best chance of a cure and, with donations from around the world, she began treatment just one month after the initial email

was sent.

Rati responded very well to aggressive chemotherapy, radiation and bone marrow transplant, and there was hope for the future of this bright, happy child. However, her cancer recurred three months before the end of her 18 month treatment protocol. Palliative care, the only treatment option, supported Rati until she died in August 2006, aged four-and-a-half years.

Curative therapy was available to Rati in Botswana, but opportunities to save her life were missed due to lack of awareness about the signs of retinoblastoma and its management, lack of support for families and poor communication.

More than 1,500 children develop retinoblastoma each year across Africa, a continent largely neglected by the global oncology community. Almost half of these children live in the eleven countries constituting Eastern Africa (Tanzania, DR Congo, Rwanda, Burundi, Uganda, Kenya, Somalia, Ethiopia, Eritrea, Djibouti and Sudan). This compares to 280 new diagnoses each year in the USA, 45 in the UK and 23 in Canada. Mortality from retinoblastoma is less than 4% in developed nations, yet many African countries face mortality as high as 90%.


C

Rati’s cancer recurred in her eye socket.

“Rati’s Challenge” was established as a special program within Daisy’s Eye Cancer Fund (DECF) to address the needs of African children like Rati.

Strategically placed at the heart of Eastern Africa, Kenya has a relatively stable economy, political history and health system, and the capital city, Nairobi, has developed as a financial, transport and aid centre for the region. The country has fostered one of the best medical training programs in Africa, and hospitals in Nairobi receive many retinoblastoma patients from neighbouring countries.

Cancer is the third most common cause of death In Kenya, after infections and cardiovascular disease. Retinoblastoma is the 10th most common cancer affecting both males and females, and the 2nd most common cancer observed in children, according to data from Nairobi Cancer Registry at the Kenya Medical Research Institute (KEMRI). However, of 449 hospitals in 8 provinces, only 7 provide cancer care, and oncology services are unavailable in 4 provinces.

Postgraduate training opportunities in cancer management and care are now available at the University of Nairobi. Training in radiotherapy and medical and surgical oncology are only accessible abroad.

The Kenyan Ministry of Health is currently reviving a national cancer control initiative, originally initiated in 1994, but abandoned three years later with a change in Ministry leadership. Although lack of funding means that cancer is not a priority, progress in oncology care is being made. Kenyan physicians are increasingly collaborating with NGOs to advance cancer awareness, prevention, early diagnosis, referral and treatment. The Kenya Cancer Association (KENCANSA) and Kenya Society for Haematology and Oncology (KESHO) promote cancer awareness and provision of medical care.

In 2005, Kenya joined the “My Child Matters” campaign, launched by the International Union Against Cancer (UICC). The team includes medical oncologists and haematologists, pathologists, surgeons, radiotherapists, a public health practitioner and a cancer registrar, drawn from six institutions, mainly centred in Nairobi. Working with the International Network of Cancer Treatment and Research (INCTR), this team focuses specifically on Burkitt's lymphoma – the most common paediatric cancer - to create awareness, achieve early detection and prompt treatment, and study associated environmental and genetic factors. Despite these important developments in Kenyan cancer care, retinoblastoma continues to be a death sentence for many children, due to delayed diagnosis, poor access to therapy and follow-up care, and misconceptions and stigma surrounding loss of an eye.

In autumn 2006, a team from DECF set out to explore the issues for retinoblastoma families in Kenya (see 2). The western lake port city of Kisumu was chosen as the focus of that


During treatment in Canada, Rati received a beautiful new eye.

investigation. Abby had previously worked for a local NGO in Kisumu, and knew staff at the Provincial Hospital where retinoblastoma is treated. Her father was born in Kenya, and diagnosed with bilateral retinoblastoma at Kenyatta National hospital in Nairobi as an infant. Abby also speaks Swahili.

On our brief trip, we could see that Kenya has many of the material resources and dedicated medical professionals necessary to prevent loss of life. However, we identified four key factors that are lacking: awareness of “white pupil” as an early feature of retinoblastoma; accurate pathological examination of removed eyes to identify high risk children and ensure appropriate application of available resources; family support to ensure take-up and completion of therapy; and communication within and between different medical disciplines and treatment centres.

During a pilot awareness project, we used posters and T-shirts carrying a photograph and simple message in Swahili illustrating the common sign of retinoblastoma, the white pupil. A public lecture featured personal stories by families about their experiences with retinoblastoma, translated between English, Swahili and Luo. A lecture at the Nyanza Provincial Hospital stimulated discussion on many aspects of retinoblastoma. The media reported on these lectures across East Africa, and 2000 copies of the poster were displayed across Kenya.

We returned to Kenya in November 2007 to visit centres where retinoblastoma is treated, and encourage development of a plan for diagnosis and management of retinoblastoma. The National Retinoblastoma Strategy has emerged as a strong collaborative initiative. Just as the spider carefully, almost invisibly, constructs her delicate web to catch her prey, so Kenya’s National Retinoblastoma Strategy can build a powerful network to tame the beast of retinoblastoma in Africa. The Strategy has the power to become a model for resource-limited retinoblastoma care, leading the way to a brighter future for affected children around the world.

A community awareness campaign in rural Kenya during our 2006 visit.


TOUR OF KENYAN RETINOBLASTOMA CENTRES

Wednesday 07/11/2007

School of Oral and Maxillofacial Surgery and Pathology, Faculty of Dental Sciences, University of Nairobi.

During our first full day in Kenya, we met with staff from the Department of Oral and Maxillofacial Surgery and Pathology at Nairobi University’s faculty of Dental Sciences. The University of Nairobi is the principle institution of medical education in Kenya. The maxillofacial surgeons see a large number of young retinoblastoma patients seeking reconstructive surgery due to extensive retinoblastoma or lack of prosthetic eyes following eye removal. The team’s holistic approach to healthcare was clear as they expressed deep concern for these children, and a strong desire to become actively involved in the National Retinoblastoma Strategy for Kenya, in the areas of pathology, maxillofacial surgery and provision of artificial eyes.


During our meeting with Dr. Mark Chindia and Dr. John Onyango (chair and vice chair of the Department), Dr. Elizabeth Dimba (lead pathologist) and Dr. Melvin D’lima (dental surgeon and meeting facilitator), we focused on the importance of expert pathological assessment and reporting in post-operative management of retinoblastoma. As we observed last year, retinoblastoma is not a priority for the general pathology services in each centre.

The maxillofacial pathology team expressed enthusiasm to incorporate ocular pathology into their program. Dr. Dimba pointed out a bottleneck in their work, since the antiquated microtome is unreliable and potentially dangerous to the user. The microtome essential in preparation of samples for study under the microscope. We toured the lab and discussed the feasibility of developing a retinoblastoma pathology service, contingent upon replacement of the microtome and provision of ocular pathology training for Dr. Dimba.

Brenda and Abby tour the Pathology Lab with Dr. Chimbia.

Dr. D’lima later introduced us to the University’s Vice Chancellor, Prof. Magoha George A. O. and the Dean of the Medical School. Both welcomed us with encouraging words for the Kenyan National Retinoblastoma Strategy.

Thursday 08/11/2007

Kenyatta National Hospital

Built in 1901, Kenyatta National Hospital (KNH) is Kenya’s largest referral, teaching and research hospital, treating 600,000 patients annually at 22 outpatient clinics, while 89,000 in-patients across 50 wards. The hospital has 1800 beds (209 private), but continues to endure frequent overcrowding, with bed occupancy periodically rising to 300%. Alongside 24 operating theatres (16 specialised), and Kenya’s National Laboratory Service, KNH also hosts the country’s Medical Research Institute (KEMRI) and the University of Nairobi College of Health Sciences.


Before 1987, KNH was operated by the Ministry of Health, but the bureaucracy of complex centralised management led to inefficient decision making and slow implementation of new initiatives designed to improve patient care. In April 1987, the hospital was reborn as a state corporation, with its own management board taking full control of administration, development activities and an annual budgetary allocation of Kshs2.6 billion [US$42.3million].

KNH is considered across East Africa to be the leading medical treatment and education centre in the region, with a particularly energetic ophthalmology training program. Our day began with a CME presentation to ophthalmology residents, facilitated by Dr. Kahaki Kimani (Director of the hospital’s retinoblastoma program) and Dr Martin Kollmann (paediatric ophthalmologist from the University of Munich, who has worked in Kenya for the past 10 years). The presentation was well received, with many important questions posed during the long discussion that followed. The concept of nationally co-ordinated retinoblastoma management was readily embraced as being the only way to optimise care for all children across the country.

Following the CME session, we met with the previously constituted Retinoblastoma Working Group, to discuss the idea of a national strategy for Kenya. This multidisciplinary Group was established in 2002. Chaired by Dr. Kimani, the group includes representatives from ophthalmology, oncology, paediatrics, radiotherapy and pathology.

Through the work of Dr. Martin Kollmann at KNH and his colleague Prof. Boergen at the University Eye Hospital in Munich, twinning was established with the Retinoblastoma Program at the Eye Clinic of the University of Essen, Germany, to enhance opportunities for children facing the loss of their second eye. Free specialised treatment in Essen has been provided to a small number of Kenyan children, and a German ocularist (Markus Ehrle) visited Kenya for several years to provide artificial eyes. Due to financial constraints, both programs have been limited in recent years. Progress in developing other initiatives has also been constrained over the past five years with limited personnel already stretched by increasing demand for care.

We discussed the priority needs of the retinoblastoma program in Nairobi, and in other treatment centres across the country. Advancing public and primary health care awareness and CME opportunities, comprehensive pathology reporting, uniform management, inter-disciplinary co-operation, psychosocial care and rehabilitation of patients (including ocular prosthetics), and international collaboration were identified as areas requiring intensive focus. The team expressed hope that close and consistent partnership with specialised centres abroad will strengthen the local service, both clinically and scientifically.

Enucleation, laser, cryotherapy, chemotherapy and radiotherapy are available for the management of retinoblastoma at KNH, along with ultrasound, CT scanning and ophthalmic photography. However, radiotherapy is not used for the treatment of intra-ocular retinoblastoma, and standard chemotherapy drugs for retinoblastoma (carboplatin, etoposide and vincristine) are infrequently available due to their high cost. Children consequently receive therapy with drugs that have not been proven effective (cyclophosphomide, adriomycin, vincristine, methatrexate and cisplatin). There are no data on outcomes.

We explored the long-term possibility of KNH joining the Multicentre Clinical Trial of the Toronto Protocol. This protocol is complex and would require special training of the local paediatric-oncology and nursing staff who are already extremely competent and dedicated. Exploring participation would open up opportunities to negotiate donation of drugs and local


corporate sponsorship to enable free or highly subsidised treatment. As KNH presently treats a large number of children, their participation in the trial would ultimately facilitate rapid acquisition of important knowledge to improve care everywhere.

The Nairobi group is ready to serve as a regional centre of excellence that can not only provide expert care for patients in Nairobi, but also collaborate with other referral centres across the country and advocate for patients within the public and health care communities. The team welcomed the DECF initiative of “Rati’s Challenge” in Kenya, and agreed that the existing working group should be broadened to include representatives from other treatment centres, under the new Kenyan National Retinoblastoma Strategy (KNRbS). We discussed preliminary plans to bring these stakeholders together in 2008 for the first KNRbS meeting, and agreed to help bring such a meeting to reality.

KNH Retinoblastoma Ward Rounds

Although KNH is the only hospital in East Africa to have a dedicated paediatric oncology ward, children receiving treatment for retinoblastoma are routinely admitted to the ophthalmology ward. At any time, 20-30 children are admitted for retinoblastoma evaluation and treatment. Each child was reviewed in turn, receiving a lollipop to enjoy as they sat quietly on a chair while the doctors reviewed their case.

Dr. Kahaki Kimani and retinoblastoma children on the Eye Ward at KNH.

Many common issues emerged in reviewing the children. Delayed pathology, sometimes inconsistent with clinical impression, was the most significant. Of the twelve children with bilateral retinoblastoma, only two retained an eye. One of those children was scheduled for removal of her only eye the following Monday.

As very few of the children had prosthetic eyes, Abby removed her own artificial eye. One child in particular responded to this action. The little girl, about 18 months old, looked intently at Abby. She repeatedly moved her finger from her cheek, just below her enucleated eye, to point mid-air at Abby’s own empty eye socket, as a little grin spread across her face.


In the absence of detailed pathology reports, many children were presumed to have extra-ocular spread of tumour, because the optic nerve diameter appeared enlarged at the time of removal of the eye. These children were admitted to undergo post-operative chemotherapy.

Most children are kept on the ward throughout initial chemotherapy, partly to ensure compliance and reduce the challenges posed by the great distances from their homes. Hospital admission is also necessary to obtain coverage under the national health insurance program, which extends only to inpatient therapy. This means that many retinoblastoma admissions to the ophthalmology ward may not be medically necessary, but provide the only way to ensure access to therapy.

KNH actively encourages mothers of children younger than five years to stay on the ward. Although parents do have to pay for this option, they are given a parent bed and provided with two basic meals per day. However, the reality is that many parents cannot afford to stay with their children, as they must return home to care for other children and earn money to pay medical bills. Of the children we saw during Ward Rounds, about one third remained alone on the ward.

Parents receive basic assistance through the department of Medical Social Work, and rehabilitative programs are provided through paediatric occupational therapy, though few children live close enough to Nairobi to benefit from the range of services.

Ophthalmology Society of Eastern Africa (OSEA)

On the second Thursday of every month, ophthalmologists and allied professionals gather at Nairobi’s 254-bed Aga Khan University Hospital for a CME meeting hosted by the Ophthalmology Society of Eastern Africa (OSEA). The society provides professional development opportunities for more than 150 members across nine countries (Kenya, Uganda, Tanzania, Ethiopia, DR Congo, Rwanda, Burundi, Zambia and Malawi).

OSEA pursues excellence in patient care through regular CME sessions, an annual scientific meeting which is hosted on rotation by each member state, publication of the English language OSEA Journal of Ophthalmology, research support, and an online forum for medical discussion. The society actively participates in National Prevention of Blindness meetings and activities, and VISION 2020 events. Despite the challenges of poor communication across the region and limited funds, OSEA is working together with the Ophthalmology Society of Nigeria (OSN) to form the Sub-Saharan Africa Ophthalmology Society (SSAOS), with the intent to extend CME opportunities across the continent.

Aga Khan University Hospital is part of Aga Khan Health Services, which maintains comprehensive non-profit hospitals in Nairobi, Kisumu, Mombasa and Dar es Salaam, as well as in India and central Asia. The Nairobi hospital actively participates in outreach health activities, and has repeatedly contributed to national infant immunisation campaigns by providing free clinics in under-served peri-urban settlements.

Prior to the planning of our visit to Kenya, OSEA had asked Dr. Kimani to give a presentation on retinoblastoma during this particular meeting. Dr. Kimani gladly welcomed Brenda to present in her place. Her presentation focused on the need for national strategies to manage retinoblastoma, and the existing opportunities to build on knowledge and expertise that is already present in Kenya. The response was encouraging and optimistic, with enthusiasm for the concept of nationally co-ordinated care, acknowledging the need for improved structure and reflecting the hope that Rati’s Challenge brings to Kenya.


Friday 09/11/2007

African Medical and Research Foundation (AMREF)

AMREF is Africa’s leading health development organization, with a mission to improve health among disadvantaged people, as a means for them to escape poverty and enhance their quality of life. The Foundation works in South Africa, and in six countries within Eastern Africa (Kenya, Tanzania, Uganda, Somalia, Ethiopia and Sudan), developing, testing and promoting models that improve health and reduce poverty, and facilitating training and capacity building at all levels of health care. Offices in Europe, North America, England and Canada, support operations.

Development of family health, clinical services, training and education are AMREF’s Priority Intervention Areas. At the foundation’s Wilson Airport Country Office, our DECF team and Dr. Kimani met for two hours with Dr. Festus Ilako, AMREF primary care operations director, to learn about these programs and the opportunities for partnership with the Kenyan National Retinoblastoma Strategy.

We presented the challenges of retinoblastoma care, the Kenyan National Retinoblastoma Strategy, and the areas with which AMREF’s programs could potentially become involved. We focused on the ease of detecting tumours, the importance of awareness to achieve early diagnosis, and the need for improved follow-up care to ensure early treatment of recurrence.

AMREF’s Family Health projects focus on the provision of health education and primary care to vulnerable groups such as mothers, children and people with disabilities. The foundation’s International Training Centre in Nairobi trains district-level health workers from 21 African countries, with further clinical training opportunities at over 100 hospitals in East Africa through the Clinical Outreach Programme.

Many parts of East Africa are remote and often inaccessible by road. Through AMREF airplanes, the Clinical Outreach Program provides medical care in these underserved regions, supporting local health workers. Through these programs, AMREF offers considerable opportunity for systemic dissemination of simple awareness materials throughout Kenya and beyond, targeting both primary and secondary level health care workers.

Of particular interest to DECF was AMREF’s application of cellular technology to transmit health information. A similar program may be particularly valuable in effective location and follow-up of children during eye camps, held throughout the country by many different agencies. Dr. Ilako welcomed the national strategy, and pledged full support of AMREF.

Lions SightFirst Eye Hospital, Loresho, Nairobi

At Lions SightFirst Eye Hospital, we met with the centre’s Medical Director, Dr. Fayez Kahn, to tour the site and discuss Lions’ involvement in the KNRbS.

Established in 2001 to supplement the services provided at government centres, Lions was built with funds raised by Lions Clubs across Kenya. Now the largest eye care centre in East Africa, expert care is provided to both non-paying and private patients. Between April 2004 and June 2007, more than 200,000 out-patients were treated, and 10,000 surgeries were performed.

From surgery to orthoptics and optometry, the self-sustaining programs initiated by Lions have broken down challenges of distance, poverty and lack of awareness to provide free


vision saving opportunities to thousands of rural Kenyans. A dialysis unit also provides care for diabetic patients, and an audiology wing bolsters care for patients with combined vision and hearing loss.

The hospital has become an international ophthalmic training centre and eye research institute. Continued research into the development and implementation of efficient, sustainable eye care programs has also led to initiation of training courses in the management of eye health services.

Brian, Dr. Fayaz Kahn, Abby and Brenda at Lions SightFirst Eye Hospital, Nairobi.

Extending well beyond its Nairobi campus with dozens of community outreach programs, Lions brings vision services to many rural dwelling Kenyan citizens. Free eye screening camps are held every day. More than 1,750 camps are conducted each year, screening more than 2 million people, and providing almost 300,000 on-site surgeries. When more extensive care is required in Nairobi, a hospital minibus transports the patient back to the city at the conclusion of the outreach mission.

Many camps maintain a specialised focus, such as refraction, diabetic retinopathy detection and awareness, cataract or paediatrics. Paediatric eye care includes school-based eye screening and treatment of refractive errors, strabismus and Vitamin A deficiency.

The outreach teams have developed close working relations with local community leaders, service groups and health care providers. Community eye health education at each camp empowers members of the public to tackle preventable blindness. The Village Volunteer program provides basic eye health education for village health care providers, and a community-based comprehensive rehabilitation program provides assistance and life-skills training for individuals affected by low vision or blindness.


Dr. Kahn, who had attended the OSEA presentation the day before, was optimistic about the provision of nationally co-ordinated retinoblastoma care in Kenya, and expressed a desire for the Lions team to join the Strategy Group. Although Lions Eye Hospital does not have the capacity for comprehensive retinoblastoma care, the centre’s excellent outreach program and expertise in sustainable eye health care offers exciting opportunities for public health education, screening and community-based follow-up care of children who have completed treatment.

Kikuyu Eye Centre, Nairobi.

Dr. Daniel Gradin, chief paediatric ophthalmologist at Kikuyu Eye Hospital, met with us following a tour of the site, to discuss participation in the KNRbS Group.

Established in 1908 as a first aid centre serving a boys’ school and Presbyterian Bible college, Kikuyu is the oldest mission hospital in Kenya. The 195-bed hospital is located 25 kilometres from central Nairobi, close to the town of Kikuyu, and is today managed by the Presbyterian Church of East Africa. Ophthalmic care is the largest service provided at Kikuyu Hospital. The ophthalmology unit provides preventative, therapeutic and rehabilitative care, and specialist medical education programs for physicians, nurses and ophthalmic technicians.

More than 3,300 eye operations and 60,000 outpatient procedures are carried out annually. Through an established community outreach program, vision care is also brought to people in the surrounding communities of Kerwa, Kanyanjara, Nguriunditu and Ruthigiti. A further 16,000 patients receive ophthalmic care through mobile eye safaris. In 2003, Standard Chartered Bank partnered with KEH to provide free paediatric (<5yrs) cataract surgeries. Operations increased from 40 to 300 per year following initiation of the SCB partnership.

Rehabilitation opportunities are also offered through the Kikuyu Rehab Centre, providing surgical, physical and occupational therapy, social, spiritual, and vocational programs that enable progression from dependency to independence. This model centre also provides professional training, and has strong links with local agencies caring for disabled children.

Community outreach programs include child health clinics and education programs. Though these programs continue to rely heavily on funding from the church and charitable donations from overseas, much effort is being invested in the development of a sustainable operating system.

In 1993, Kikuyu Eye Hospital identified that 30% of eye patients had travelled from Western Kenya, suggesting provision of eye care services in Western Kenya failed to meet demand. In response, Sabatia Eye Hospital in Western Province was established by Kikuyu Eye Hospital, with support from the local community, Friends Church of Vokoli and Christian Blind Mission (CBM) of Germany.

Serving a population of more than 6 million people across Western, Nyanza and Rift Valley Provinces, Kikuyu’s sister hospital provides preventative, curative and rehabilitation eye care. In addition to on site therapeutic services, an extensive outreach programme takes vision care to the rural communities across western Kenya. Like Kikuyu, Sabatia Eye Hospital has Diode and YAG lasers and a paediatric anaesthetist, enabling focal therapy for children with intra-ocular retinoblastoma.

Both Kikuyu and Sabatia Eye Hospitals work together with the Kenyan Ministry of Health and surrounding hospitals to implement the country’s five year National Strategic Eye Care Plan and Vision 2020 plan. Both programs aim to provide primary eye care to under-served


areas, and to develop an efficient eye care network across the country.

Although both hospitals are well-established centres of ophthalmic excellence, like Lions SightFirst, they do not have the capacity to provide complete retinoblastoma care. Enucleation and focal laser therapy can be provided, but children are referred to Kenyatta National Hospital for other therapies such as chemotherapy or radiation. However, the excellent outreach and rehabilitation programs provide significant opportunities to improve early diagnosis and follow-up.

Dr. Daniel Gradin, Abby and Brian at Kikuyu Eye Hospital

Dr. Gradin discussed with us the possibility of a short fellowship at SickKids Hospital for a new paediatric ophthalmologist on the Kikuyu team. He also keenly requested that Kikuyu Eye Hospital be included in the KNRbS.

Monday 12/11/2007

Moi Teaching and Referral Hospital, Eldoret.On arrival in Eldoret (7hrs drive from Nairobi), we met with Dr. Jorry Odede OGW, chief of ophthalmology at Kenya’s second national teaching and referral hospital, ahead of a CME session scheduled for the following morning.

At the apex of health care in north-western Kenya, this 550 bed centre is the teaching hospital of Moi University’s School of Medicine. A major national centre for training of physicians in many specialties, the hospital also provides training programs in community nursing and biomedical engineering. The nursing training centre offers e-learning and training in health care computer applications. The hospital incorporates the Academic


Model for the Prevention and treatment of HIV/Aids (AMPATH), Kenya's most comprehensive initiative to combat HIV.

In1996, the Elgon Eye Unit was developed as part of a major construction project. An ophthalmic theatre in the Majaliwa Theatre Complex enables specialist surgical care for patients, while close links with other regional hospitals promote continuing medical education and shared patient care. Preventive health education is provided through a strong network of ophthalmic community officers.

The department of Ophthalmology works together with oncology, paediatrics, neuro-surgery and plastic surgery to provide care for children with retinoblastoma. Though the hospital offers laser and chemotherapy, children are referred to Kenyatta Hospital for intensive focal cryotherapy. The recent purchase of a new CT scanner, and integration of a Local Area Network (LAN) throughout the hospital has further complimented the established infrastructure, offering new opportunities in the efficient management of retinoblastoma.

Dr. Odede was hopeful that a national approach to retinoblastoma care would further enhance these services, while offering opportunities to share expertise and make these resources more widely available to disadvantaged families.

Tuesday 13/11/2007

Moi Teaching and Referral Hospital, Eldoret

Dr. Odede facilitated a lively CME session at Moi TRH. Paediatric ophthalmologists, oncologists, nursing staff, and representatives from pathology and pharmacy attended this highly constructive meeting. A number of ophthalmologists attended from regional hospitals.

Dr. Jorry Odede at the Seminar at Moi Teaching and Referral Hospital.

Our presentation focused on current standard therapy and the value of coordinated care, which prompted intensive discussion. Provision of efficient pathology and chemotherapy


were the main concerns of those in attendance, recognised as the greatest needs to provide life-saving care to children with advanced disease. During this discussion, Dr. Kipyegon Maina, Head of Pharmacy, announced that the previous week, his department had secured a supply of carboplatin, etoposide and vincristine. For the first time, a Kenyan hospital could offer the international standard three drug combination chemotherapy for retinoblastoma.

In recognizing the challenges faced by children with retinoblastoma and the medics who care for them in this region of Kenya, our meeting was constructive and positive. We found significant enthusiasm for co-ordinated care and unanimous wish to be included in the KNRbS.

Before our departure, we met briefly with Prof. Harun Arap Mengech, Medical Director of Moi TRH. Prof. Mengech informed us of a recent Obstetrical educational and training collaboration with University of Toronto, and expressed enthusiasm for the work of Rati’s Challenge in Kenya.

Thursday 15/11/2007

Coast Provincial Hospital, Mombasa.

Coast Provincial General Hospital (CPGH) is the second largest government hospital in Kenya, and the principal referral hospital for Coast Province. Though the site was designed to accommodate 700 beds, and the hospital experiences constant pressure to expand its current capacity of 550, funding for the necessary staff is not available.

In the last decade, the hospital has been preparing for autonomous management to meet the challenges of declining government support. An extensive modernization program funded by the Japan International Cooperation Agency (JICA), provided US$8.5 million for construction of a new maternity wing, extensive renovations and procurement of new equipment. Though progress was initially slow, financing, management and patient care have all improved through successful completion of a comprehensive assessment and strategic development plan.

During our visit to the ophthalmology ward, we learned that the department provides diagnostic and enucleation care for children affected by retinoblastoma, but the majority of children present with advanced disease, requiring medical care currently unavailable in Mombasa. Chemotherapy is not offered, and most children in need of further care are referred to Kenyatta National Hospital. However, few reach Nairobi due to the costs of transport, and when care is initiated at KNH, communication between the two hospitals is poor. As a result, most children are lost to follow-up. Though Dr. Francis Waweru, director of the ophthalmology team, was on leave during our visit, his junior doctors expressed much interest in Rati’s Challenge, and were keen for CPGH to be included in the KNRbS.

Lighthouse for Christ Eye Hospital, Mombasa.

Situated close to Coast Provincial General Hospital, in an idyllic coastal location, the Lighthouse is a mission eye care centre, established by a successful Californian ophthalmologist. In 1969, Dr. Bill Ghrist opened his Mombasa home to people requiring treatment, asking for payment only from those who could afford to give. In time, Bill and June Ghrist established the Lighthouse for Christ Eye Hospital and mission centre, to bring vision to the people of coastal Kenya.


We toured the modern two-acre campus with the hospital’s Medical Director, Dr. Matende brahim. Dr Ibrahim leads a permanent staff of more than 50 Kenyans, with volunteer eye surgeons, nurses and ophthalmic technicians from Europe and North America.

Ruth, Collins, Brian, Abby and Brenda at Lighthouse for Christ Eye Hosptial.

A purpose-built two-storey eye centre was opened in September 2005, including examination rooms, a surgical centre with two well-equipped operating rooms, and a new paediatric centre. The introduction of paediatric general anaesthesia in 2005 has enabled surgical care of children without need for referral elsewhere. The fully equipped optical shop provides a modern optometry service, dispensing more than 2,500 ready made and custom glasses each year.

More than 26,000 patients are seen each year at the Eye Centre, and over 2,000 major eye surgeries are performed annually. Community good will and overseas donations support the hospital’s mission to treat all patients, regardless of their ability to pay. Children are treated free of charge, encouraging parents to bring them as early as possible for medical attention.

As many coastal citizens cannot afford bus tickets to Mombasa, mobile Eye Camps bring essential eye care to remote and under-served coastal communities. More than sixty Eye Camps are conducted each year, providing non-surgical care to approximately 8,000 patients, with more than 400 surgeries performed on site. For more specialised surgery, patients are transported back to Lighthouse to receive the necessary medical care.

Dr Ibrahim expressed deep concern for the high incidence of advanced retinoblastoma within the coastal Swahili communities. He cited cultural stigma associated with disability of a child as the major barrier to early diagnosis. He applauded our “Kuni tatizo Gani?” poster campaign, having encountered one of our posters in a local shopping centre earlier in the year. Community awareness, he said, is the single most powerful tool to address the stigmas and cultural practices that currently undermine a child’s chances of survival.


Dr. Ibraim describes finding the DECF awareness poster in a shopping Mall in Mombasa.

Lighthouse cannot provide a comprehensive treatment program for retinoblastoma, and Dr. Ibrahim refers affected children to KNH for medical care. However, the new paediatric facilities and well-established outreach programs present opportunities for community education, screening, focal therapy and follow-up care as part of the KNRbS. Dr. Ibrahim emphatically offered his support to Rati’s Challenge, and requested that Lighthouse join the KNRbS.

Friday 16/11/2007

Kwale District Eye Centre, Mombasa.

Kwale District Eye Centre was founded in 1993 by English ophthalmologist Dr. Helen Roberts, to make essential eye care available in the impoverished rural communities south of Mombasa. Dr Roberts strives to ensure that no patient is refused treatment for financial reasons, and generous donations from well-wishers and grant funding enable this mission to continue.

Though Dr. Roberts was away from the centre during our visit, she expressed a desire to be included in the KNRbS. Catherine Jakaiti-Ogeya, KDEC chief administrator, treated us to a royal tour. Facilities include screening rooms and an operating theatre, though general anaesthesia is unavailable and paediatric surgical cases are referred elsewhere, primarily to Kilimanjaro Christian Medical Centre in Moshi, Tanzania. A local teacher was recruited several years ago and trained as a low vision therapist, providing comprehensive specialised assessment and follow-up of children with vision loss in a purpose-built low vision suite. He also conducts community-based screening and follow-up care, primarily for children.

The centre operates an established community outreach program, staffed by volunteers such as village health workers who are specially trained in the detection of vision problems and counselling those in need of medical care. Over 10,000 patients are seen at


community outreach screening clinics each year, and 50% of patients treated by KDEC are referred by village health workers.

An extensive eye health education program operates throughout the region, providing community awareness through organised meetings and visits to schools and women’s groups. Training and support is provided to the parents of visually impaired and blind children, to primary school teachers and other sectors of the community.

Though paediatric surgical care is unavailable at Kwale District Eye Centre, the well established community eye health outreach program presents varied opportunities for systemic retinoblastoma awareness activities and follow-up care as part of the KNRbS.

Saturday 17/11/2007

Ministry of Health.

Dr. James Nyikal, Director of Medical Services, kindly welcomed us to his office at the Ministry of Health on his weekend time, in order to meet our very tight schedule. He was very up-to-date on the forefront of knowledge of retinoblastoma, and care for affected children. His interest stems from his Neonatology expertise. Through a deep discussion of the issues for Kenya in this rare childhood cancer, Dr. Nyikal showed us that much is possible, particularly with the broad national enthusiasm of Kenyans to work together for the KNRbS.

Monday 19/11/2007

Nyanza Provincial General Hospital, Kisumu.

At Nyanza Provincial Hospital in Kisumu we met with Dr. Fanuel Othero (chief ophthalmologist) and Dr. Juliano Otieno (paediatrician and medical superintendant), to discuss existing retinoblastoma care and the National Rb Strategy. They had both welcomed us to Nyanza in 2006.

Nyanza Provincial General Hospital is the largest referral hospital in south western Kenya, serving a population of more than 8 million. Known to the local community as “Russia”, this 400 bed hospital was built with funds from the Russian government, and opened in 1969. With bed occupancy frequently reaching 200%, the 500 staff are challenged to provide optimal care.

Recent US investment in a state-of-the-art paediatric centre at the nearby Centre for Disease Control has reduced burdens on the NPGH children’s ward, to some degree. HIV/AIDS, malaria and tuberculosis related admissions accounted for more than half of all paediatric admissions in the five years prior to construction, and the new centre now eases some of the strain on staff and resources. NPGH has allocated 26 beds on the children’s ward to paediatric oncology care, though more than 30 children with cancer may be found on the ward on any given day.

We discussed with Dr. Othero, the challenges of late diagnosis of retinoblastoma, and present medical practices in Kisumu and the surrounding region. The hospital’s one oncologist has no expertise in paediatric oncology, and retinoblastoma care is provided by paediatricians and ophthalmologists. An ancient radiotherapy suite lies idle due to persistent malfunction and lack of local skills and resources for repair.


Three ophthalmologists care for children with eye disease, though enucleation and chemotherapy are the only treatment modalities for retinoblastoma. Focal therapy is not available, and the chemotherapy drugs used have no proven benefit for retinoblastoma. Though some children are referred to KNH for treatment, few ever reach Nairobi due to the costs of transport, lack of family accommodation and medical bills in Nairobi. Most children present with advanced retinoblastoma and severely limited opportunity for successful treatment.

The high regional incidence of ocular Burkitts lymphoma in children leads to challenges in clinical diagnosis, as advanced tumours can appear very similar to advanced retinoblastoma. Consequently, almost all children are diagnosed through pathological review following biopsy surgery.

Dr. Othero explained that the hospital has 10 community teams working in rural districts and medical health centres. These teams are in the position to educate primary health workers and the public, raising awareness of leukocoria and retinoblastoma, and the importance of early diagnosis and treatment. However, there are presently no psychosocial support personnel who could provide education about the medical/physical outcomes of successful surgery and treatment, such as living well despite the loss of an eye. Dr. Othero confirmed that most paediatric retinoblastoma patients do not receive a prosthetic eye after removal of their own eye, and do receive no preparation or support for living after the loss of an eye.

Morgan presented to Dr. Otieno an informal overview of the role of a child life specialist in providing psychosocial support, medical education and simple coping strategies for use during painful procedures to help both children and staff. Dr. Otieno shared with us that presently there are no psychosocial supports in place for children being treated in this hospital. Permission was granted for a child life presentation of comfort positioning for the nursing staff and some medical staff during a “lunch and learn” continuing medical education session, to take place the following day.

Both Dr. Othero and Dr. Otieno expressed a strong wish to be actively involved in the development of the KNRbS.

We visited the occupational and physical therapy clinic on site, where we learned that there are no OT or PT sessions or mobility training for retinoblastoma patients following the enucleation of one or both eyes. Mobility training importantly can assist blind and visually impaired children to gain confidence in orienting themselves, understanding body awareness and how to navigate in the world efficiently, effectively and safely.

Tuesday 20/11/2007

Hawthorn Sisters Children’s Hospice, Kisumu

At the Hawthorn Sister’s Children’s Hospice, Morgan provided hands-on child life training and education for Roselyn (palliative care nurse) and another attendant staff member. The activities included adapting common play activities to the ability of individual patients, simple expressive arts activities for all hospice patients, massage techniques for hands, feet and legs to improve circulation, reduce pain, assist with flexibility and enrich physical contact and interaction with caregivers. Additional training was provided to teach clay making. Special, easy-to-prepare clays are ideal for patient play and exploration, while casting handprints gives families lasting memories.



During our visit to the paediatric oncology ward at Nyanza provincial hospital, we met with Pamela, the social worker, and Joyce, the head nurse. Both confirmed what we observed: there are presently no toys or diversional activities for the children. An unsupervised playroom for children living in the paediatric ward contains some broken toys and old pages of children’s artwork. A volunteer teacher from the community provides some educational activities when possible, but these efforts are severely hampered by lack of resources. There is no medical education, either through discussion or play, about the medical experiences and interventions the children will be receiving.

Limited oral pain medications exist for children dealing with bone pain, stomach/gastrointestinal pain and post-surgical pain. These pain medications are given a set times during the day, when available. There are no non-pharmacological pain management strategies presently utilised.

During painful procedures, nurses do not position paediatric patients for comfort. Children who exhibit fear, move during procedures or are non-compliant during attempted procedures are held down by numerous staff in order to complete the procedure, reinforcing fear and non-compliance. During our visit, a young oncology patient lay moaning in her hospital bed, in considerable abdominal pain. Her grandmother attended the patient. Morgan demonstrated some gentle strokes to the back and legs, to assist with pain management.

During the Lunch and Learn session, Morgan presented four patient comfort positions for painful procedures to a group of fifteen staff members. The response was positive and numerous requests were made for another session on non-pharmacological pain management strategies.

November 21/11/2007 to 25/11/2007


Morgan returned to Nyanza Provincial Hospital to provide child life medical play and education sessions to all the paediatric oncology patients who could attend. The sessions were approximately two hours long, with fourteen children attending. The sessions included creation of cloth dolls for each child, on which to demonstrate/pretend medical play procedures.

The sessions also facilitated medical play focusing on injections, intravenous chemotherapy and blood drawing procedures with pretend and real medical equipment, and enabled expressive arts and colouring activities. Deep breathing techniques were modelled during pretend needle play, to demonstrate a valuable coping strategy. The children displayed natural, age-appropriate fear responses to the needle play, but over the course of the sessions gained confidence and comfort through medical play rehearsal of each step in the injection/ IV /blood drawing process.

Although the challenge of retinoblastoma care is great in Kisumu, there is much dedication to the cause among doctors and nurses who care for affected children at NPGH. Many of the challenges currently experienced are not insurmountable, and the hospital’s paediatric oncology experiences to date provide a positive foundation on which to move regional retinoblastoma care forward as part of the KNRbS.


Morgan and the “young doctors” of NPGH

Thursday 22/11/2007

Kenyatta National Hospital

Brenda and Brian met briefly with Dr. Kimani to outline research opportunities. Two good projects can set the stage for constructive interventions with potential to change outcomes quickly for retinoblastoma children. Both projects are suitable for pairs of Kenyan and Canadian ophthalmology graduate students/residents to work together.

First, study of the pathology of eyes removed over the past year for retinoblastoma, and correlation with clinical presentation, management and outcome will establish the current status and extent of disease. A prospective study would set up parameters to address in the development of a Kenya-wide retinoblastoma pathology service, as proposed through the School of Oral and Maxillofacial Surgery and Pathology.

Second, a pair of students could travel to each major retinoblastoma treatment centre and review the clinical records, recording the clinical and pathological stage of presentation for patients in the last few years. This would become an invaluable baseline against which to measure outcomes and change after national implementation of awareness and education programs.

Brenda then flew to India and China for brief meetings around the National Retinoblastoma Strategies in these countries.


Monday 26/11/2007

We attended morning meetings at both the Nairobi Hospital and KNH, to discuss future child life lectures and CME sessions. Nairobi Hospital confirmed a 1 hour long CME at 12:30pm on September 16th, 2008 on non-pharmacological pain management strategies.

We participated in an extensive afternoon interview with Family TV, covering various aspects of retinoblastoma. We discussed awareness of white eye reflex to achieve early diagnosis, the valuable role of child life in caring for the child patient and family, the work of DECF and the KNRbS, and the importance of fighting stigma associated with loss of an eye. To address this last issue, Abby removed her own prosthetic eye for a portion of the interview.

University of Nairobi, Doctors Plaza

Doctors Plaza was constructed by Kenyatta National Hospital and Nairobi University, with funding from the World Bank. The complex provides private practice office space rented by 75 specialist doctors from Kenyatta National Hospital and the Medical school of Nairobi University. This enables private practice to be conducted close to Kenyatta Hospital, while generating revenue to support the Hospital’s work.

This final meeting before our departure focused on plans for the first Kenyan National Retinoblastoma Strategy Meeting. Following consultation with Dr. Kimani (newly appointed chair of the KNRbS) and Dr. D’lima (newly appointed secretary of the KNRbS), we settled tentatively on September 19-21, 2008. The meeting will be attended by ophthalmologists, oncologists, pathologists, pharmacists, specialist nurses, social workers, parent representatives ant others, to begin collectively moving forward Kenya’s National Strategy in retinoblastoma care.

Our three-week visit was deemed a tremendous success by both us and the Kenyan retinoblastoma community. Abby, Morgan and Teresa departed Kenya the following day, tired, but full of enthusiasm and hope.


SUMMARY OF RETINOBLASTOMA CARE IN KENYA

Based on our tour of Kenyan RB treatment centres, here we provide a summary of what we observed and were told about. We have not conducted a systematic study of retinoblastoma in Kenya. However, a constructive proposal is emerging through the Kenyan National Retinoblastoma Strategy, to initiate a series of feasible projects to empower change based on evidence. The results of these projects may yield knowledge that can support and inspire national strategies for retinoblastoma families in other developing countries.

Awareness

In Kenya, reliable health information is not easy for the public to access. National basic child health awareness and campaigns against HIV, malaria and other endemic infectious diseases strive to improve results of these very difficult problems.

The white pupil reveals cancer in the child’s eye.

Worldwide, parents are the first to see a strange white glow in the child’s eye in low level lighting, long before their first visit to a health worker. However, a poverty-stricken family does not consider that this painless sign justifies expensive medical investigation. Yet, if they knew that their child’s life was possibly in such grave danger, almost all parents say they would try to find the money from somewhere to see a doctor.

Kenya has no nationally established system of regular child health checks, and swift access to doctors informed about retinoblastoma is extremely limited. While the USA has 28 doctors per 10,000 people, Kenya has just one doctor per 10,000 people, and most countries south of the Sahara have even fewer. Most primary health care workers are unaware of childhood cancer, and do not appreciate that a white pupil in a child’s eye calls for urgent referral to a specialist.

Therefore, the many children affected by retinoblastoma already have advanced disease at diagnosis, which potentially has already spread outside the eye. No data is available at present to determine how many children present with disease extended outside the eye.


Referral and Diagnosis

Once parents notice something wrong with their child’s eye(s), many families first seek assistance from traditional healers, in the absence of affordable and accessible medical advice. Children displaying signs of retinoblastoma may also be first seen at rural health care centres. The over-worked and under-trained staff frequently misdiagnose retinoblastoma to be a more common ailment, such as infection or cataract. Some children receive therapy for an incorrect diagnosis, causing families to spend precious funds on inappropriate medication. Few of these dedicated workers are aware of childhood eye cancer. Referral to eye doctors may be difficult and slow, and further delayed while families gather together the money required to pay for a doctor.

The most impoverished Africans will commonly be very polite with their doctors, and may hesitate to ask questions. When families are told that nothing is seriously wrong, they rarely seek a second opinion. This may be due to trust of the doctor’s word, or inability to pay for another medical consultation. Once they reach a heavily overworked primary care doctor, it is likely that the consultation will be just a few minutes, reducing the opportunity of an accurate diagnosis, or even suspicion, of retinoblastoma. Without the strong suggestion of retinoblastoma, referral even to a Provincial Hospital does not necessarily mean referral to an ophthalmologist.

Ophthalmologists in Kenya are generally well informed about retinoblastoma. However, some leading eye centres focus on adult disease and do not have facilities to anaesthetise children. Referral to such otherwise excellent centres can further delay diagnosis.

Ultrasound is an excellent tool for diagnosis of retinoblastoma, since calcified tumour is distinctive and clear. Ultrasound is available in the large eye care centres. Other diagnostic tools such as CT scan are unavailable to most children in Kenya, due to their high cost.

The diagnosis of retinoblastoma is often clear to an expert without an examination under anaesthesia. However, this is required to check both eyes and evaluate the extent of tumour spread. Under the same anaesthetic, ideally the worst severely affected eye is removed for cure. With a focus on establishing a diagnosis, some doctors may consider a needle biopsy inside the eye, but this poses extremely high risk for spread of the tumour, and is strongly discouraged.

Ophthalmologists in East Africa may not see children until their tumours are so advanced that they cause the eye to protrude forward, or the eye may rupture. Advanced orbital Burkitt’s lymphoma, which is much more common than retinoblastoma in malarial regions of East Africa, causes a similar appearance. Many doctors rely on pathological examination of the orbital tumour for diagnosis, which may further delay the true diagnosis and initiation of treatment for which ever disease is present.

Care of at risk children

Effective genetic testing for retinoblastoma exists, but is unavailable in Kenya. Very few families can afford to pay for testing overseas.

Limitions on knowledge, and geographic and financial access to expertise that result in delayed diagnosis, also limit the ability of families to achieve monitoring of the affected child or at-risk relatives. Surveillance of siblings and children of adult survivors for small retinoblastoma tumours is not routine in Kenya.


Treatment

The most important treatment for retinoblastoma, removal of the eye(s) containing life-threatening cancer, is widely available in Kenya, once the diagnosis of retinoblastoma is made. The next steps for these children include accurate, timely pathology on the removed eye, follow-up care including monitoring for the other eye and for recurrence, treatment in case of threat, or reality, of extraocular disease, and vision-saving therapies to treat retinoblastoma and avoid loss of a fellow eye. These are very hard for Kenyans to access. Some of these deficiencies present immediate opportunities to dramatically change outcomes for Kenyan retinoblastoma children.

SurgerySurgical removal of the eye is a straight-forward surgical procedure that is well done by Kenyan ophthalmologists. However, the over-worked doctors may not have time to talk extensively with family members and explain the vital need for this form of treatment, nor its implications and recovery. Parents have scant opportunity to ask questions that enable understanding of the rehabilitation process and a constructive future for their children. Stigma and fear of loss of an eye cause some families to delay or refuse surgery at a time when the child may be curable by surgery alone.

In Kenya, orbital implants to replace the volume of the eye are not routinely inserted at the time of removal of the eye. This is due to cost or poor supply of the spherical implants, and due to belief that their use will mask any recurrence of retinoblastoma within the orbit.

Extensive retinoblastoma is common in Africa. With the best intention to help, difficult major surgery may be attempted, removing the eye and tissues around the eye (orbital exenteration). Such surgery is unlikely to achieve long term cure of extensive orbital retinoblastoma, and causes disfigurement and complications, further burdening the family and the health care system. Much preferable with better palliation and some small prospects of cure, is the use of chemotherapy.

PathologyAccurate, expert pathological examination of removed eyes to evaluate the risk that the retinoblastoma has spread outside the eye is challenging in Kenya. Removed eyes are sent for evaluation in the local general pathology labs. In some instances, an entire referral hospital is served by just one over-extended pathologist who has no opportunity to study retinoblastoma pathology. This commonly results in frequent delays of several months. Reports may only confirm the diagnosis of retinoblastoma, and not accurately evaluate the risk for tumour extension beyond the eye.

In the absence of swift, detailed pathology report on which to base further therapy, doctors may proceed with post-operative therapy based on clinical suggestions during surgery, for example, assuming that the optic nerve is involved because it appears thickened.

Post-operative therapyIn the absence of clear pathology reporting to identify patients at high risk of orbital recurrence, children may be treated with chemotherapy following surgery, with the intention to treat potential residual cancer before it causes illness. Chemotherapy drugs that are standard therapy for retinoblastoma around the world are expensive and frequently difficult to obtain. Therefore, children may receive a modified chemotherapy protocol, developed for the management of equatorial Burkitt’s lymphoma. This protocol is usually given every 2


or 4 weeks for up to several years. Doses are sometimes reduced in young children to minimise side effects.

Due to the costs and risks of infection, children do not commonly have a central venous catheter inserted, as they would otherwise to facilitate the frequent need for an intravenous line. They therefore undergo repeated intravenous access of peripheral veins for administration of chemotherapy, related medications and blood product transfusions, and for removal of blood for routine tests.

Radiotherapy is available only in Nairobi, where it may be used for the treatment of children with extensive orbital retinoblastoma or invasion of the brain. Costs of radiotherapy also exclude this option for many children. Due to their young age, children are usually anaesthetised for each treatment.

Vision salvage therapySmaller tumours within the eye can be cured by combinations of chemotherapy, laser therapy and cryotherapy. Although these technologies are available in Kenya, they require an intense coordinated multidisciplinary team effort that is difficult to accomplish at the present time in Kenya. The laser and cryotherapy alone need examinations and treatment every 3 to 6 weeks over a long time. If the opportunity for such meticulous care does not exist, the tumours will grow, destroy vision and ultimately require removal of the eye to save the child’s life.

External beam radiotherapy can be very effective in treating retinoblastoma contained within the eye. However, in Kenya radiotherapy has rarely been used to treat intra-ocular retinoblastoma in Kenya.

Child Life

Play is especially important for children with cancer. Helping to boost their mood can have a positive impact on their response to treatment and resistance to infection. With few people to manage the use of donated resources, children have only limited access to such opportunities.

Presently, the only identified psychosocial experts in the health care system are social workers, psychiatrists and psychologists. These experts are not in place in every hospital or clinic, and those that do hold positions in a medical institution have extremely heavy caseloads, requiring that the majority of their supports only go to the most critical cases.

There is one supervised hospital playroom in Kenya for both paediatric patients and the children of adult patients. This playroom, called The Sally Test Paediatric Centre, is located at the Moi Teaching and Referral Hospital in Eldoret. The director of the program, Sarah Ellen Mamlin BS RN M.Ed, and her team provide daily educational opportunities, care and recreational activities. These activities range from painting and creating art, dancing and playing with the many donated toys at the centre.

At Nyanza Provincial Hospital in Kisumu, a group of local school teachers have established a program called ABC Funshine, to provide education opportunities to school-age children admitted for cancer therapy, and recreation to all inpatient paediatric oncology patients. However, their efforts are severely hampered by lack of funding, few resources and the demands of their own full time teaching positions in local schools.


Follow-up

Families who live a great distance from the treating hospital may not have funds to return for post-operative follow-up. Children therefore remain in hospital for some time following surgery, so that recovery can be monitored, and to ensure the child attends follow-up assessments. In addition, poor sanitation and lack of access to safe water at home, experienced by 44% of Kenya’s population, dramatically undermines the survival of immune-compromised children receiving chemotherapy on an out-patient basis.

Following surgery to remove an eye, many children do not receive artificial eyes or facial prosthetics. Local expertise in making artificial eyes is minimal. The artificial eyes are rarely custom made, and those children who do receive eyes, may not have access to replacements as they grow.

Regular examination of post-treatment children is planned and encouraged, but many youngsters are lost to follow-up. Without supportive information, many parents cannot understand the nature of retinoblastoma and the need for close monitoring beyond active treatment. Poverty prevents most from taking their child the long distances for routine examinations, and limited information provided to the primary and referring doctors inhibits their ability to carry on the follow-up. Consultation between different disciplines, hospitals and primary health care providers is unstructured and slow, frequently hindered by unreliable and incomplete access to fast communication tools such as email and telephone.

Many children slip into the void created by endemic poverty, lack of communication systems and poor provision of information to families. Due to incomplete post-treatment follow-up, it is impossible to know whether children are cured (defined as at least 5 years of disease-free survival). Follow-up of retinoblastoma survivors into adulthood is virtually non-existent, and many survivors remain unaware of the risks they and their children may face throughout life. As a result, examination of at risk children from birth is extremely rare.

Family Support

When a child has been diagnosed with retinoblastoma, and treatment outlined, the family often faces huge challenges to help their child, and the impact on the whole family is great.

Cancer treatment is not free of charge in Kenya. The majority (58%) of Kenya’s population lives on less than US$2 per day, and most families cannot afford to pay the big bills for medication and hospital admission. National Medical Insurance is available to Kenyan citizens, and families are encouraged to enrol their child upon diagnosis. However, this plan covers only inpatient treatment, and most people cannot afford to pay the insurance premiums. Siblings are often withdrawn from school in order to save money for medical care of the child with retinoblastoma. Even though primary education is now free, the cost of uniforms, books and other materials is prohibitively high for families facing a medical crisis.

Hospital staff and families are sometimes able to secure grants from banks or businesses to sponsor the treatment of individual children. However, such monetary support is inconsistent, and treatment is frequently refused or abandoned for financial reasons. Many children receive a diagnosis and return home with their parents to die – without access to pain management, palliative care, emotional or practical support.

When treatment is carried out on an outpatient basis, many children fail to attend appointments due to the cost of transport. When the children are in the hospital, support for


parents varies. In Nairobi, beds are provided for parents of children younger than five years of age, and relatives are encouraged to stay with these children. Due to lack of space at other hospitals, parents are discouraged from staying with their children, however young. A dearth of family accommodation frequently leads to parents sleeping “rough” (on the street) outside the hospital in order to remain close to their child.

The routine hospitalisation of children throughout the initial treatment phase increases the likelihood of completing therapy, but has many negative implications. Many parents are forced to leave their children during treatment and return home to other children who need care, to plant crops in order to put food on the table, or get back to jobs so that medical bills can be paid. Children spend many days in hospital, occupying beds needed for sicker children. They have few toys, educational or recreational opportunities.

The bed and board charges for these days in hospital are the responsibility of the parent. In many cases, children who have completed inpatient therapy, or died, are not released from hospital until their medical bill has been paid. Fearing the repercussions of their unpaid debt, some families disappear completely, leaving the child unclaimed in hospital. Yet these families clearly love their child - most will have overcome significant obstacles to reach medical care in the first place.

Poor access to prosthetics, lack of understanding about retinoblastoma treatment, and traditional beliefs among some communities causes often unbearable stigma. Parents may be accused of having a cursed child, and children are often actively excluded from playing with other children, or from school and wider society. Some families have been forced out of their community by the fear and ignorance of others.

Running for a bright future.


STRENGTHS AND OPPORTUNITIES

Kenya has a national blindness plan, and well-equipped eye hospitals and ophthalmic units within National, Provincial and Mission Hospitals and Eye Care centres provide a training hub for ophthalmology across East Africa. Although there is only one consultant ophthalmologist for every 1 million people, compared to 1:70,000 in the UK, the ophthalmic community across Kenya has expressed a keen desire to work together in the pursuit of improved care for children with retinoblastoma. In 2003, Kenya began training of specialist ophthalmic nurses to support ophthalmic clinical officers in under-served hospitals across the country, increasing eye care capacity and expertise.

Recognising that their centre is the only facility in Kenya currently providing a comprehensive retinoblastoma program, the team at Kenyatta National Hospital several years ago established a working group to examine ways to improve care. Though no other hospital can provide the full range of medical services required, each of the provincial hospitals and eye centres that we visited has expertise in some components: surgery, diagnostic imaging, focal therapy or chemotherapy. By working together, everyone recognises tremendous opportunities to develop regional treatment programs in the framework of a national strategy. The logical centre for the KNRbS is Kenyatta National Hospital. A national system will have the strength to crush the barriers of distance and cost by bringing therapy closer to the children who need it.

50% of Kenya’s 36 million residents live in rural areas, where there is limited access to established ophthalmic centres. In an effort to serve these under-served communities, many eye care centres have developed successful outreach programs, providing a range of services and educational opportunities targeted at village health care workers, parents, schoolteachers and community leaders, in addition to core eye screening programs for the general population.

Each of these programs offers exciting possibilities for the development of awareness initiatives that will give parents and health care workers the power to achieve life and vision saving early diagnosis for children affected by retinoblastoma. Consistent, comprehensive public education programs that do not cost large amounts of money can bring opportunities to save both life and vision across the country, and the wider Eastern Africa region.

When children have completed therapy and returned to their homes, regular follow-up care can be enhanced through a network of community outreach programs and retinoblastoma treatment facilities to ensure early treatment of any recurrence, and eye screening to achieve early diagnosis for infant relatives.

There is much to be positive about for the future of children with retinoblastoma in Kenya. Working as a dedicated team, the talented physicians and auxiliary medical staff of the KNRbS are building on their strengths to ensure that each child diagnosed with retinoblastoma is cared for effectively.


THE KENYAN NATIONAL RETINOBLASTOMA STRATEGY: A MODEL FOR RETINOBLASTOMA CARE

Simple changes can dramatically improve cure and vision-saving outcomes for many children in developing countries who develop retinoblastoma.

We find that Kenya is an ideal site to develop a Model Retinoblastoma Strategy for Less Developed Countries. Kenya offers these advantages:

• Deep connections through John White, the father of our co-founder and Chief Executive; born in up-country Kenya, John was diagnosed with retinoblastoma in both eyes in 1946 Nairobi;

• Strategically placed at the heart of the Eastern Africa region;• Until the 2007 elections, a relatively stable economy, political history and health

system; remerging determination of the Kenyan people to overcome their difficulties constructively;

• The capital city, Nairobi, has developed as a financial, transport and aid centre for the region;

• A major hub for ophthalmology training in Africa, many retinoblastoma patients travel to Kenya from neighbouring countries;

• An established Retinoblastoma Working Group at Kenyatta National Hospital.

Nairobi’s Retinoblastoma Working Group was founded in 2002 to try and forge a path towards optimal care. Colleagues from across Kenya have now joined this working group to form the Kenyan National Retinoblastoma Strategy (KNRbS). The KNRbS aims to build a sustainable, locally managed retinoblastoma program, capable of effectively caring for

children and their families from across Kenya and Eastern Africa.

The KNRbS includes diverse expertise:

medical professionals, (ophthalmologists, oncologists, nurses, pathologists, social workers),

researchers in cancer biology, clinical studies, healthcare delivery, social sciences, informatics and Best Practice Guidelines,

families and survivors

health advocates,

community leaders,

the business community, and

the media.


Kenya lies at the heart of the largeEastern Africa community.

This strategy has the potential to build capacity for adaptation and implementation in diverse resource-limited settings throughout the world.

Achieving Global Goals

Our Model National Retinoblastoma Strategy for Developing Countries supports 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 can be realised through this project. The Charter, adopted at the 2000 World Summit Against Cancer for the New Millennium, recognises that:

“Currently achievable improvements in cancer survival remain unrealised, 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.”

In this section we suggest potential solutions to specific challenges faced in developing countries like Kenya, for discussion by the KNRbS:

A systemic awareness campaign to achieve early diagnosis of retinoblastoma and prompt referral of children.

Co-ordinated care (including a pathology service) to enable effective treatment.

Best Practice Guidelines and professional development opportunities to stimulate common standards of care.

A national retinoblastoma database to streamline medical record keeping and patient management and follow-up.

Child life initiatives to enable effective psychosocial support, increase patient cooperation and reduce unnecessary medical costs.

Structured family support to achieve greater access to appropriate care, and reduce burdens currently endured by many families.

An artificial eye service to provide prosthetic eyes and supportive care for children who undergo removal of affected eyes, and to help challenge stigma that often prevent take-up of curative therapy.

Awareness of Retinoblastoma

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

Late diagnosis is due to:• Near absent public awareness of “white pupil” (leukocoria) as an early sign of cancer

in the child’s eye(s). This cause is global, not only in regions with reduced resources.• Poorly informed health care providers (primary care doctors, paediatricians,

ophthalmologists, oncologists), unable to interpret the parent’s observations as serious and life-threatening, may delay referral to an ophthalmologist familiar with retinoblastoma.


• Poverty that leads to the primary use of traditional medicines, since cost of care, transport and family accommodation prevent access to accurate diagnosis.

• Lack of access to health care information and widespread illiteracy that limits the family’s ability to learn on their own about retinoblastoma.

Early diagnosis is essential for survival of retinoblastoma. When cancer is contained within the eye, surgical removal of that eye is curative. When early diagnosis is achieved, outcomes are better, the costs of medical care are significantly lower, and the burden on the family and the local health care system is reduced.

Our large awareness poster is on display during a meeting in Nakuru.

A Retinoblastoma Awareness Campaign A retinoblastoma public awareness campaign in Honduras resulted in earlier diagnosis3. In 2006, the 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. In 2007, we heard anecdotal evidence that the campaign had some effect.

We now suggest a structured awareness campaign, including:• A retrospective study of stage of disease of children diagnosed and treated prior to

start of the campaign;• Dissemination of educational posters featuring the white pupil to primary health

centres, to promote knowledge and awareness among the public and primary health providers;

• Circulation of parental education postcards and posters during national infant vaccination campaigns, to inform the parents of infants in the at-risk age group. The principal information will be presented in a pictorial format, to bypass the challenge of illiteracy;

• Public service announcements in the print and audiovisual media, since many people read newspapers, watch television and listen to the radio;

• Educational seminars during continuing medical education for health workers caring for small children; and


• A prospective study of stage of disease of children diagnosed and treated in one and two years after the start of the campaign.

Early diagnosis is a child’s only real hope for cure in Africa. Simple strategies to raise awareness have potential to dramatically reduce the tragic loss of precious children, and instead secure their future as happy, healthy individuals.

Coordination of Care for Retinoblastoma Children

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

Two opportunities to impact many children with retinoblastoma can be addressed through KNRbS coordination initiatives: centralisation of pathology will bring retinoblastoma-specific expertise to Kenya and national coordination between centres will track patients to optimal care and improve follow-up.

PathologyIn order to correctly assess risk of metastatic disease, physicians need accurate assessment of the eye that has been removed. If tumour has not spread into the optic nerve, choroid, sclera or anterior part of the eye, risk for recurrent disease is very small and no further treatment is necessary. If tumour has breached these landmarks, the child’s chance for cure is improved by chemotherapy before recurrent disease is evident.

When pathology reports are delayed or only confirm the diagnosis of retinoblastoma, without these details, some children will not receive the treatment they need. Others might be over-treated, resulting in more harm than good, including over-hospitalization and the downward spiral of family distress and potential abandonment.

The Pathology Unit of the Maxillofacial Department at the University of Nairobi School of Dental Sciences has proposed a centralised national retinoblastoma pathology service. This program will achieve expert review and accurate reporting in a timely manner for every child, and at the same time nurture collaboration across the Kenyan retinoblastoma centres.

Before the end of 2008, DECF undertakes to:• facilitate training in comprehensive retinoblastoma pathology assessment and

reporting for Dr. Elizabeth Dimba; and• replace the Pathology Unit’s antiquated microtome (an essential piece of pathology

lab equipment), enabling a safer and more effective working environment for the retinoblastoma pathologists.

In turn, the Pathology Unit will provide a centralised pathology service for all eyes removed for retinoblastoma, that will promptly assess and report landmarks of tumour spread beyond the eye, and risk for recurrence. This will:

• enable evidence-based allocation of post-operative treatment;• reduce burdens on families whose children do not require further therapy, or who will

not benefit from further intensive treatment; and• preserve vital resources for the children genuinely at risk of extra-ocular extension of

their cancer, who need extra therapy.


A nationally coordinated care programPoverty blocks access of many families to specialist retinoblastoma care. The majority of children receive treatment at regional hospitals, still often far from their home. The KNRbS will enrich the knowledge of retinoblastoma at these regional centres by expanding channels through which to share skills and resources and advance professional development.

Coordinated management of retinoblastoma will be enhanced by:• Annual KNRbS meetings including the full spectrum of health workers treating

retinoblastoma patients. These meetings will promote solutions and innovation, maximizing Kenyan owned efforts and collaborative approaches. DECF-K will work to raise accommodation and travel bursaries to enable broad participation. The first meeting will be held in September 2008 in central Kenya.

• Opportunities for skilled volunteers to work with local physicians and health teams in the management of retinoblastoma.

• Assistance for physicians who know best the local issues, enabling their contribution to professional education appropriate for the resource-limited setting. Education will empower physicians to take an active, leading role in the growth of effective patient management.

• An educational and consultative Kenyan Internet Tumour Board. This will assist in optimizing available resources.

• Administrative support to coordinate limited specialist resources for better access. This could include development of a roving mobile clinic to take retinoblastoma-specific technologies, currently available only in Nairobi, to satellite centres across the country.

Through a nationally co-ordinated approach, more children will have access to vital therapy. Physicians will be better equipped to provide optimal care for their patients. We can realistically expect that survival will increase, and some of the burdens currently experienced by families will be significantly reduced or eliminated.

Best Practice Guidelines

Guidelines and clearly defined treatment protocols generally enhance optimal outcomes. Little published literature is available regarding best management of retinoblastoma in resource-limited settings. Limited professional development opportunities also lead to poor agreement on the best way to manage children with retinoblastoma.

The KNRbS presents the opportunity to introduce guidelines appropriate for the local Kenyan setting. The members of the KNRbS can work to achieve consensus among themselves for management of patients and their families, wherever possible, based on evidence of outcomes in Kenya.

For example, the Canadian Retinoblastoma Best Practice Guidelines are in the final phase of development as a project of the Canadian Retinoblastoma Society through its National Strategy Group. These Guidelines can serve as a template for adoption and modification to meet the needs of the KNRbS. The upcoming and future meetings can devote a portion of time to gradual development of guidelines for the resource situation of Kenya.


Best Practice Guidelines will establish common standards of care and facilitate appropriate management of retinoblastoma across Kenya. In the process, financial, physical and social burdens currently experienced by families will be reduced, and consistent access to appropriate care will be increased.

A DECF team meeting during a short break in the Aberderes.

Retinoblastoma Registry

Across Africa, retinoblastoma care is poorly managed, and appropriate follow-up is virtually non-existent. Inconsistent and incomplete medical records, coupled with poor telecommunication networks between treatment centres, create this situation.

A solution is the development of a national point-of-care database, using secure internet technology. eCancerCarerb is a record patient data covering diagnosis, treatment and follow-up, that tracks retinoblastoma treatment histories.

When resources permit, we will: • build the Kenyan eCancerCarerb database and host it on a secure server;• provide training for clinicians and data managers in the use eCancerCarerb; and• oversee integration of use of eCancerCarerb in existing Kenyan health services.


Local cellular networks are widely established in East Africa, and cellular technology is the principle form of telecommunication. We anticipate strategies to harness this resource in the use of eCancerCarerb, thus reducing the challenges posed by slow landline internet communication. This approach will also enhance follow-up care.

For example, children treated for retinoblastoma require frequent follow up, but many families cannot afford the repeat visits to specialist centres.

• Using eCancerCarerb, children can be identified for follow up at one of many pre-arranged eye camps, held regularly in rural areas across the country.

• Doctors in the field can examine the child’s eye(s) and send information and ophthalmic photographs via a PDA directly to the specialists in Nairobi.

• Following real-time consultation with those specialists, the child and parent could be transported back to the treatment centre with the eye camp team, if further examination or treatment is needed.

Improved record keeping through eCancerCarerb is expected to: • ease the process of tracking treatment history;• improve inter-centre communication;• facilitate effective patient management;• allow sustainable follow-up of patients beyond treatment;• enable comprehensive evaluation of the national strategy as an effective approach in

management of retinoblastoma;• advance understanding of epidemiology, treatment response and socioeconomic

issues, thus identifying priority needs;

Once eCancerCarerb is well established, we will evaluate possible integration with the developing World Retinoblastoma Registry. The World Registry gathers data from around the globe to advance understanding of epidemiology, treatment response, regional issues and needs, and retinoblastoma biology. This data also provides a critical baseline for structuring multi-centre clinical trials.

Child Life / Child And Family Focused Healthcare

Cancer treatment is a stressful and potentially traumatic experience that can overwhelm a child’s natural ability to cope and cooperate with their doctors. This can inhibit their healing and normal development, with lasting negative effects on their physical and mental health.

Child life meets the distinct needs of young patients, promoting effective coping and optimal development through play, preparation, education, and self-expression activities that are based on natural child development. Even the tiniest infants can benefit from techniques such as infant massage and comfort positioning. However, child life is virtually unknown in resource-limited settings, yet here it may most highly impact on quality of life.

Introduction of child life support in Kenya may be accomplished by:

a series of practical in-job training courses for medical professionals and auxiliary staff from across Kenya, including non-pharmacological pain management, comfort positions, grief and loss support (for loss of eye), medical play concepts, child friendly language and interactions;


introduction of child life and family friendly health education modules/lectures for health professionals in co-operating hospitals, medical universities and local clinics;

training women from several credit union cooperative groups across Kenya to produce the simple cloth dolls used in self-expression and medical preparation play with retinoblastoma and other paediatric patients;

encouraging the women’s groups to produce low-cost dolls for sale or donation to hospitals and families undergoing treatment; and

developing culturally sensitive educational resources that promote understanding and acceptance of surgical eye removal and other aspects of retinoblastoma, and the child’s value and continued abilities as a member of the community following surgical removal of an eye.

Rati plays doctor before her own surgery in Canada.

Introducing child life into retinoblastoma care in Kenya will:

enable patients to effectively manage stress and actively cooperate with their medical care;

reduce stigma which currently impedes take-up of curative therapy and hinders post-operative psychological healing;

improve a child's treatment experience and psychosocial well-being so that the chances for successful integration into society and school are optimised;

reduce costs associated with treatment by:o eliminating the need for anaesthesia during procedures such as lumbar

puncture or radiotherapy;o decreasing the number of nurses required to complete painful procedures

such as inserting an IV; ando minimizing the use of expensive pain medications;


Children have basic human rights to assistance in coping that helps them manage pain and stressful situations. These rights were created to ensure that all children receive the best medical care and practices available.

The child friendly language version of the UN Convention on the Rights of the Child (Unicef,1990) states that children have the right to:

“be protected from being hurt and mistreated, in body or mind” (Article 19);

“the best health care possible, safe water to drink, nutritious food, a clean and safe environment, and information to help [children] stay well” (Article 24); and “

“help if [children] have been hurt, neglected or badly treated” (Article 39).

The KNRbS can address more than elimination of the cancer. The medical care package can be enhanced by embracing child life and family friendly health care practices. These activities will support, uphold and facilitate the child’s basic human rights, enabling them to move forward through life as a happy, confident individual.

Family Support

When any child is diagnosed with retinoblastoma, the family experiences a whole new world of uncertainty and challenge. However, the experience for families in developing countries is significantly different from the experience of families facing retinoblastoma in developed countries. Providing access to optimal medical care is only part of the need.

A comprehensive family support system may take many years to develop, but this is a crucial element in strengthening retinoblastoma care. Through these programs, care for the child and entire family can be dramatically improved, and the burdens they currently face can be eliminated or significantly reduced.

Information A range of print and audio-visual resources for families can supplement the information given by doctors. These will provide detailed information about various aspects of retinoblastoma care, enabling parents to make informed decisions when consultation time with doctors is limited. A support network through which families can connect, share experiences and support one another has been effective in other parts of the world.

Transport and accommodation A national strategy of co-ordinated care could reduce distances travelled by many families. Perhaps a locally funded travel sponsorship program for impoverished families who continue to face long distances and prohibitively high costs.

A locally funded family hospitality house in Nairobi could serve families whose children require intensive post-operative therapy.

A Family House will help to:• accommodate the child and family outside hospital, thus keeping the family together,

minimising costs and freeing up hospital beds for ailing patients;• reduce the risk of, or prevent abandonment of both treatment and child;• account for the child's whereabouts and ensure regular attendance at all hospital

appointments;


• monitor nutrition and hygiene in children whose immunity is compromised by therapy, and protect the child from infection;

• encourage emotional and practical support between families;• provide opportunities currently unavailable in the hospital due to lack of manpower

and space, such as play and education.

Until construction of such a home, a patient fostering might provide loving temporary homes during treatment for children from far away. Such children are frequently admitted to hospital throughout treatment and are at high risk for abandonment.

Support from mum and dad is a great comfort to a sick child in hospital.

Cost of medical careAs the Kenyan National Retinoblastoma Strategy evolves, treatment costs will be significantly reduced for many families. Accurate and timely pathological review of removed eyes will identify children who do not need chemotherapy treatment after surgery. Child life support will empower children to cooperate in their care, further reducing costs. Accommodation support for the parents and child will reduce the need for expensive hospitalisation of children between therapies. We hypothesise that such support will achieve a reduction in the number of abandoned children, and improvement in completion of treatment.


Palliative support When curative treatment is no longer possible, palliative support can continue. Training in child pain management approaches when drugs are not available, and emotional support for families through a national family network would alleviate much suffering.

Brenda, Abby and Morgan.


CONCLUSION

Lack of government health investment in childhood retinoblastoma ignores the fact that this is a highly curable cancer when diagnosed and treated early. However, while the challenge of retinoblastoma is secondary to other important public health priorities in developing countries, we are making small strides in the quest for optimal care of affected children around the world.

A sustainable, locally owned health care program can bring retinoblastoma survival in the resource-limited setting closer to that experienced in countries like England and Canada. By working together with the local community to increase knowledge of retinoblastoma management and facilitate nationally coordinated awareness and care, we optimise the application of resources already available in Kenya, and improve accessibility for families currently overwhelmed by the emotional burden and costs of intensive therapy. Collaboration at the local, national and international level is vital to secure an effective infrastructure for the support of these children and their families. Much has been achieved already, and we are impressed and encouraged with the dedication of the Kenyan team.

This novel approach to the management of a rare disease in a resource-limited setting could pave the way for dramatic improvements in the management of other rare diseases that are often overlooked, yet have a catastrophic impact on life in developing regions of the world. The Daisy’s Eye Cancer Fund relies on charitable donations to enable our work in Kenya. Together with your support, with hands joined around the world in action, we can bring hope to Africa’s youngest cancer patients and their families.


REFERENCES

1. Qaddoumi, I. et al. Team management, twinning, and telemedicine in retinoblastoma: A 3-tier approach implemented in the first eye salvage program in Jordan. Pediatr Blood Cancer (2008).

2. White, A. & Gallie, B. Rati's Challenge: Retinoblastoma in Africa. Report of Visit to Kisumu, Kenya. (2007) http://www.daisyseyecancerfund.org/Files/Reports/ratischallenge.pdf.

3. Leander, C. et al. Impact of an education program on late diagnosis of retinoblastoma in Honduras. Pediatr Blood Cancer 49, 817-9 (2007).


http://www.daisyseyecancerfund.org/Files/Reports/ratischallenge.pdf

http://www.daisyseyecancerfund.org/Files/Reports/ratischallenge.pdf

CONTACT DETAILS

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Daisy’s Eye Cancer FundThe Mana House

73 Boundary Brook RoadIffley, Oxford, OX4 4AL

EnglandTelephone: 01865 243 654

+441865 243 654 from outside the [email protected]

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Daisy’s Eye Cancer Fundc/o Lucy Fuccillo

Ophthalmology, Rm M105The Hospital for Sick Children

555 University AvenueToronto, Ontario M5G 1X8

CanadaTelephone: 1-416-813-5868 (this is an

answering service, we will return your call)[email protected]

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Daisy’s Eye Cancer FundRatansi Education Trust Building,

University WayPO Box 63302 – 00619

NairobiKENYA

Telephone: 0720 729 936+254 720 729 936 from outside Kenya.

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To donate please visit either Web site.Thank you for supporting Daisy’s Eye Cancer Fund.


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