Ratiʼs Challenge: A Vision for Africa international/19474-DECF-Kenya Rep… · that will build capacity to achieve health for retinoblastoma children, wherever they live. While maintaining

Ratiʼs Challenge:A Vision for Africa

Retinoblastom

a Cure

Report from the First Kenyan National Retinoblastoma

Strategy Meeting

September 19-21, 2008Report Date: February 16, 2009

Kahaki Kimani, Nairobi, Kenya,Brian Ouma, Nairobi, Kenya,

Brenda Gallie, Toronto, Canada,Abby White, Oxford UK,

Helen Dimaras, Toronto, Canada,Morgan Livingstone, Toronto, Canada,

and the Kenyan National Retinoblastoma Strategy Group.

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

..................................................................................................................................Kahaki Kimani 5.....................................................................................................................................Brian Ouma 5

...................................................................................................................................Brenda Gallie 5......................................................................................................................................Abby White 5

.................................................................................................................................Helen Dimaras 6.........................................................................................................................Morgan Livingstone 6

...........................................................................Kenyan National Retinoblastoma Strategy Group 6..............................................................................................................................................Foreword 7

.......................................................................................................................................Abbreviations 8................................................................................................................................................Preface 9

........................................................................................................................................Introduction 11....................................................................................................................Overview of Conference 13

.........................................................................................................................Launch Ceremony 13..........................................................................................................Continuing Education Lectures 14

............................................................................................Situation of Retinoblastoma in Kenya 14......................................................................................................Optimal care in retinoblastoma 14

..................................................................................Best Practice Guidelines for retinoblastoma 14.....................................................Introduction to Child Life and it’s value in retinoblastoma care 15

.......................................................................................Internet Connectivity for Retinoblastoma 15..............................................................................................................................Situation Analysis 16

...................................................................Challenges identified in management of retinoblastoma 19....................................................................................................................................Focus Groups 20

...................................................................................................................Awareness Focus Group 20....................................................................................................................................Challenges 20

.................................................................................................................................Opportunities 20...............................................................................................................AWARENESS ACTIONS 23

............................................................................................................Medical Care Working Group 24..................................................................................................................Referral and Diagnosis 24

.......................................................................................................................................Pathology 25....................................................................................................................Medical Management 25

...........................................................................................................MEDICAL CARE ACTIONS 26.............................................................................................................Family Support Focus Group 27

................................................................................................................Accessing Medical Care 27.....................................................................................................................................Information 29

..........................................................................................................................Psychosocial care 30.................................................................................................................................Opportunities 30

.......................................................................................................FAMILY SUPPORT ACTIONS 31.................................................................................................Resource Mobilization Focus Group 32

....................................................................................................................................Challenges 32.................................................................................................................................Opportunities 32

..................................................................................................................................Partnerships 33........................................................................................RESOURCE MOBILIZATION ACTIONS 34

....................................................................................................................................NEXT STEPS 35..........................................................................................................................Specialist Centres 35

..........................................................................................Resource Mobilisation Advisory Group 35.......................................................................................................................Steering Committee 36

.................................................................................................................................Next Meeting 36.......................................................................................................................................Conclusions 37........................................................................................................................................References 38

..................................................................................................................................Contact Details 39

Rati’s Challenge Report 2008 2

ACKNOWLEDGEMENTS

The first Kenyan National Retinoblastoma Strategy (KNRbS) Meeting was a resounding success because of the dedication and support of many people. The Daisy’s Eye Cancer Fund (DECF) - Kenya Board of Directors worked tirelessly to ensure the conference was well-organised and productive.

The Ministry of Medical Services have enthusiastically supported the KNRbS since its inception. We thank Dr. Michael Gichangi, Director of Ophthalmic Services, for the great energy he invested in supporting planning of the meeting, and for his enthusiastic presence throughout the event. During the Launch Ceremony, Prof. Anyang Nyongo, Minister of Medical Services graciously offered words of encouragement and continued support of the Ministry, and we thank him warmly for this commitment.

Our meeting was blessed with a beautiful venue, and we thank the staff of Lukenya Getaway for looking after us all so well. We especially thank the management for their very open handed support of DECF. Julie Kinywa of the Marketing, Department, and Josphat Muiu of the front-of-house team made us feel very welcome, and ensured our stay ran very smoothly.

Many of the KNRbS Group members travelled great distances to Nairobi, from all corners of Kenya. They gathered at a central

point and travelled together by bus to Athi River. We heartily thank Express Connections Ltd for the generous and efficient transportation package they provided for our national team.

This meeting was made possible by grants from the Canadian Institutes of Health Research (Meetings, Planning, Dissemination Grant: Global Health) and the Sir Halley Stewart Trust. We thank both organisations for nourishing and enabling the KNRbS vision.

We thank Mr. Kishore Devji and Francesca Njage of the Rattansi Educational Trust for their gracious assistance in acquiring materials for the meeting.

We thank the team at Limitless Technology in Langata for printing up our delegate materials and providing internet access to meet our needs during the run-up to the meeting.

Each colourful delegate pack contained symbols of hope beyond the printed materials pertinent to our meeting. The gold ribbon for childhood cancer shone brightly throughout the three-day meeting, thanks to the lapel pins provided by Candlelighters USA. We thank Bonnie Shoval for ensuring these reached us in time to take them out to Kenya.

We thank Christie Healey for the very kind donation of CDs which enabled us to share the incredible music of her late husband with all of our Kenyan colleagues. During his life, Canadian Blues and Jazz musician and retinoblastoma survivor Jeff Healey was an enthusiastic supporter of DECF, and before he died in March 2008, he asked that donations in his memory be given to support our continued work in Africa. Sharing his “Among Friends” album with the Kenyan team enabled us to introduce them to one or our most dedicated supporting families.


Our delegate packs were lovingly composed by Lucy Kaite, Rosemary Terry Njoki and Eunice Wanjiku, and we thank them much for their constant gifts of time and willing hands to daily propel the KNRbS forward.

Once again, our international team travelled very well in Kenya with Peter “Baba Silo” McOduogo, our excellent chauffeur and fixer. We could not imagine now being in Nairobi without Baba Silo on our team. We also thank Peter’s colleague, Moses Abuto, for his assistance on the few occasions when we needed a second driver.

The official launch of the KNRbS was a particularly tasty affair thanks to the heavenly cake made by Madam Saloni Rajoni of Crackajack Bistro in Gigiri. Chocolate and fresh strawberries have never tasted so good in combination!


ABOUT THE AUTHORS

Kahaki KimaniDr. Kahaki Kimani is the Director of the Kenyatta National Hospital (KNH) Retinoblastoma Team, a dedicated community of professionals who daily manage the care of children affected by eye cancer in Kenya. Several years ago Kahaki recognized the needs and opportunities that would be address by collaborative care for retinoblastoma in Kenya. She now leads the Kenya National Retinoblastoma Strategy Group. Kahaki is Medical Director of Daisy’s Eye Cancer Fund (DECF)-Kenya and a lecturer in ophthalmology at the University of Nairobi. She strongly believes that a brighter future can be created for her young patients through diligent team efforts and focused collaboration with colleagues across the country and around the world.

Brian OumaAs the Chief Executive Officer of DECF-Kenya, Brian works tirelessly to advance the efforts to improve survival from retinoblastoma in Kenya. A natural people-person, he is the official liason between DECF-Kenya and its partners. Before being recruited to DECF-Kenya, Brian served as co-ordinator of Father Tom’s Kids, an organization that matches African students with sponsors to support their continued education. Brian’s attention to detail and organization, his enthusiastic multi-tasking and strong commitment to Kenya’s children with cancer, inspires and focuses the efforts of the KNRbS and DECF-Kenya.

Brenda GallieBrenda’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 at the Ontario Cancer Institute/Princess Margaret Hospital, she uses science to improve the lives of her young patients and their families. The teams she leads have contributed to fundamental understanding of cancer development, while translating discoveries into health, for example, by developing affordable genetic tests that both 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, while reducing risks associated with conventional therapies. Frustrated by high mortality rates in resource-limited counties, Brenda co-founded DECF to step up action for children with retinoblastoma around the world. She now serves as International Medical Director of DECF.

Abby WhiteAbby 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 Oxford University, with a special emphasis on development in sub-Saharan Africa. She co-founded DECF 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.

Helen DimarasAfter completing a PhD focusing on the molecular genetics of retinoblastoma development, Helen was struck by the fact that her research only reached a minority the world’s affected children, while the reality for the majority was suboptimal care. She is currently pursuing post-doctoral training in clinical trials and global retinoblastoma research. She is the coordinator of a Multicenter Trial of the “Toronto Protocol” for treatment of bilateral retinoblastoma, currently active in Toronto, Vancouver, Montreal and Singapore. She is actively involved in coordination of the Canadian National Retinoblastoma Guidelines for Care, a document that will be useful not only in Canadian practice but also to other nations wishing to form a Retinoblastoma Strategy. As a global retinoblastoma research fellow, her special interest is the study of factors that make global health programs effective and sustainable.

Morgan LivingstoneAs a Certified Child Life Specialist (CCLS) and Certified Infant Massage Instructor (CIMI), 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.

Kenyan National Retinoblastoma Strategy GroupRoseline Amuti, Teresa Beyer, Melvin D'Lima, Elizabeth Dimba, Michael Gichangi, Jessie Githanga, Fathiya S Hamumy, James Idewa, Wako Jarso, Oduor Jectone Owoko, Justine Jelagat, Frederick Kagondu, Mwihaki Kamau, Harriet Kavere, Abdirahdan Khalif, Fayaz Khan, Benard Kinara, George Kubai, Akichem Lokele Samson, Stephen Machara, William Macharia, Sarah Ellen Mamlin, Kishor Mandaliya, Ibrahim Matende, Patrick Mukunsi, Maria Goretti Mumbi, Patricia Mutambi, Jackline Mwikya, Esther Ngari, Patrick Ngari, Godfrey Nyaga, Kevin Nyandieka, Emmanuel Nyenze, Hellen Nzuki, Francis Ochieng, Pamela Ochieng, Jorry Odede, Godfrey Ombuya, Calvin Omondi, Moses Ouma Orwe, Bhagi P. Daya-Ramani, Jamilla Rajab, Farzana Rana, Vijoo Rattansi, Hillary K. Rono, Phillip Sinei, John Sironka, Demissieta Tadesse, George Taliani, Alice Thuo, Maina Victor, Issac Wansala.


FOREWORDAs I read through Rati’s Challenge off I went down memory lane many, many moons ago. There I was the starry eyed little girl, barely seven years old, together with my younger brother Jimmy, listening to mother’s tales which always fascinated us. This was in Zanzibar, our little island where we were born.

This particular tale started with us two younger ones of our family of five, asking why we always went every Sunday to this home we knew as Walezo, (where elderly and sick people were housed and looked after by some nuns), to personally distribute goodies to all who were present there. We thoroughly enjoyed doing this and always sat and spoke to each and every resident at Walezo, while handing them their share of what we were distributing that particular day. We knew everyone at Walezo by their names, and they ours.

Today, Mother’s story to us was about two brothers. The elder one was called Henry. He was very rich indeed, but very bad tempered and a real scrooge who never shared anything with anyone. He was just a great “meanie” who most of the time looked like a miserable wretch. If you happened to visit him at mealtimes, he would never ask you to partake of the meal. Sharing was way beyond his comprehension.

The younger brother was called Charles. He was a very likeable and kind person. Materially he was not at all rich like his brother, but spiritually he was a billionaire who spossessed a heart of gold. As far as temperament went, he and his brother were like chalk and cheese. He was always kind to everyone and had a very smiley face. In short, he was happy, unlike “grumpikins” his brother. He was there for all who needed his help in whichever way, and was ready to share the little he had. Moral of the story: “If God has given you too much of anything, he has made you a trustee of it. So share it with a smile, and happiness will forever be yours. For there is no joy like sharing.”Many decades later, when Imran - our son - was seven years old (he is almost twenty-three now), wide eyed with thumb in his mouth he sat listening earnestly to his father’s tales, which he also thoroughly enjoyed. Hassan told him a similar story about sharing, and ended with the same moral.As I read through Rati’s Challenge, I wondered if the six writers so dear to me had heard similar stories too when they were much, much younger, for it takes one with a heart larger than life to embrace the work they have undertaken. I am so proud of all of you.Kahaki, so committed to your young patients and their families. Brenda with your ever-smiling and kind face, you are always so ready to serve in what you believe. You are a joy to have around. Brian, so gentle and softly spoken you are, but mountains you can move. Abby, with your sense of humour and courage you are a boon to all. Helen (our Helen of Troy), ever-smiling, and Morgan so dedicated in what you do. What a great team you make.Dr. Vijoo H. M. Rattansi (Mrs) OGWChair - Daisy’s Eye Cancer Fund - KenyaChair - Rattansi Educational TrustNairobi, Kenya, February 2009


ABBREVIATIONSAKUH Aga Khan University Hospital

CCLS Certified Child Life Specialist

CEV Carboplatin, Etoposide, Vincristine (chemotherapy drugs)

CIMI Certified Infant Massage Instructor

CPH Coast Provincial Hospital

DECF Daisy’s Eye Cancer Fund

DHMT District Health Management Team

DOS Department of Ophthalmic Services

IIRC International Intraocular Retinoblastoma Classification

KEMRI Kenya Medical Research Institute

KEMSA Kenya Medical Supplies Agency

KEPI Kenya Expanded Program on Immunisation

KEU Kikuyu Eye Unit

KNRbS Kenya National Retinoblastoma Strategy

LCEC Lighthouse for Christ Eye Centre

LEH Lions Eye Hospital

MCH Maternal and Child Health

MoH Ministry of Health

MTRH Moi Teaching and Referral Hospital

NPH Nyanza Provincial Hospital

Rb Retinoblastoma

SEH Sabatia Eye Hospital

TNM Tumour, Nodes, Metastases (tumour classification)

UoN University of Nairobi


PREFACERati’s face smiled down at her attentive audience. Sixty-five people who never knew this little girl were gathered together in a country she had never visited, because she had died from a cancer they all knew could have been cured. Everyone in the room was struck by the enormity of what this little girl’s life – and ultimately her death at just four years of age – had achieved.

Rati was born in rural Botswana. Aged nine months, Rati was diagnosed with retinoblastoma, a rare cancer that forms in the developing eyes of babies and young children. Her diagnosis had been delayed by limited knowledge of the disease, and though there was high potential for cure when she was first diagnosed, incomplete treatment and poor follow-up led to development of an incurable cancer recurrence when she was two-and-a-half years old.

Rati’s family turned to the internet for help, and hands joined around the world to give her the best last chance of survival. Daisy’s Eye Cancer Fund (DECF) was founded with a donation from a British family, to help meet the costs of Rati’s medical care. Daisy had recently returned from specialist retinoblastoma care in Canada. Rati appeared to respond very well to treatment at Toronto’s Hospital for Sick Children, but two months before her fourth birthday, the cancer emerged again and could not be beaten. She died on August 21st 2006, aged four years and five months.

The tragedy of her loss is sadly common in Africa, where survival in some countries is thought to be less than 10%. Yet the path she walked in her last two years was unique. She brought the suffering of Africa’s children with retinoblastoma to the attention of the international retinoblastoma community. More importantly, her experience illustrated how simple changes can make a great difference to these children and their families.

When Rati died, DECF established Rati’s Challenge, a focused effort to build regional capacity in Africa. Kenya emerged as the initial region for several reasons: Kenyans had earlier set regional collaboration for retinoblastoma care as a priority, Kenya occupies a strategic location in Eastern Africa and is a major centre for health-care, aid, transport and commerce on the continent, and DECF’s Chief Executive, Abby White, speaks Swahili and knows Kenya well, since her father, John White, was born and raised in Kenya, where, as a baby in 1946, he was diagnosed with retinoblastoma in both eyes.

In November 2006 and 2007, Abby White and DECF Medical Director, Dr. Brenda Gallie, met with individuals and small teams across Kenya to lay foundations of communication and discuss the possibilities of a Kenyan national strategy for retinoblastoma1,2. A multidisciplinary Kenyan National Retinoblastoma Strategy (KNRbS) Group emerged, with a mission to optimise outcomes for affected children in Kenya and Eastern Africa.


C

During treatment in Canada, Rati received a

beautiful new eye.

Rati’s cancer recurred in her

eye socket.

So it was that sixty-five people gathered in Rati’s memory, a beautiful sun-soaked September afternoon in the conference room at Kenya’s Lukenya Getaway Conference Centre in Athi River. Five members of the DECF team from England and Canada joined the Kenyan delegation, who travelled from across Kenya to participate in this first annual Strategy meeting. Many travelled by road for more than six hours, and several delegates from the northern towns of Lodwar and Moyale endured several days on unfriendly roads to participate.

We report how the first KNRbS Group Meeting achieved the broad objective to initiate a long-term strategy in Kenya. As Rati’s smiling face disappeared from the screen, the room reverberated with eager anticipation of big results from the three days of work that lay ahead. Rati had brought this incredible team of people together to link their capable hands and build a future for affected children and families affected by retinoblastoma.


INTRODUCTIONRetinoblastoma is a curable cancer. In developed countries, 97% of affected children are cured, many retaining useful vision. “White pupil” is an easily detectable sign of the cancer in its early stages. When completely within the eye, retinoblastoma is 100% curable. Surgical removal of the affected eye alone cures the child of cancer. If both eyes are affected, intensive therapy often saves at least one eye with useful vision.

However, without prompt specialist medical care, retinoblastoma quickly spreads to the eye socket, brain or bone marrow, with very poor chance of cure, even with the most advanced therapies. Survival approaches 100% in developed countries, where only 8% of the world’s children with retinoblastoma live. In less economically developed countries, specialist care is limited and 92% of children with retinoblastoma have less than 20% chance of survival.

In Africa, retinoblastoma is frequently not detected early enough to achieve optimal medical care. When the children finally reach a health facility, they face a maze of inadequate or inappropriate diagnostic and treatment services, lack of emotional support and rocketing medical bills. Their parents and guardians may be overwhelmed and forced to abandon the children in the hope others can care for the children. Many affected children face a slow, agonising, isolated death. This is something we all believe can be fixed.

Though the burdens this cancer places on affected families and the health care system are almost overwhelming, the launch of the Kenyan National Retinoblastoma Strategy (KNRbS) heralds a bright new dawn for Kenya – and for Africa. The KNRbS group has come together under the banner of DECF to begin the hard work of building effective, sustainable local capacity in retinoblastoma care that can ensure these rights are honoured.

The KNRbS Group is an extraordinary collaborative team including ophthalmologists, ophthalmic clinical officers, oncologists, pathologists, pharmacists, specialist nurses, a Kenya Expanded Program on Immunisation (KEPI) trainer, parents, survivors and other stakeholders from across Kenya. There is no one more qualified to lead the way to build support for future families than those who have already walked the path with their own families, knowing its twists and turns, understanding its challenges and its opportunities.


The group has set its mandate to formulate an effective national approach in order to achieve optimal outcomes for all affected children and their families. Kenya already has the resources and surgical skills to cure children even save vision when both eyes are affected, if diagnosis is early enough. Yet three year survival at the country’s main referral centre – Kenyatta National Hospital (KNH) – is just 26%3.

On September 19th, 2008, the KNRbS Group convened its first annual meeting. The three-day conference was held at Lukenya Getaway, a spacious rural venue in Athi River. The meeting aimed to quantify resources currently available across Kenya for the care of children and their families, to identify and begin formulating realistic solutions to address the most urgent needs.

We stand together on the threshold of significant change, ahead of us a great vista of opportunity to apply our collective skills and experience - developed on the operating table, in the clinic, in the laboratory and in our homes - to make our common dream a reality.

Our journey began with two little girls – Daisy and Rati - born worlds apart but uniquely joined by the tragedy that is retinoblastoma. Two little girls whose intense suffering and great courage has sewn the seeds of a revolution in retinoblastoma care for Africa’s most desperate children.

The following words were spoken by Brian Ouma, Executive Director of DECF-Kenya, in his address at the official KNRbS launch ceremony:

"Do not follow where the path may lead. Go instead where there is no path - and leave a trail." (Words of the nineteenth century American philosopher and writer, Ralph Waldo Emerson). From this moment forward, we go boldly together where there is yet no path in Kenya, and we will leave for those behind us not just a trail, but a clear avenue of hope. We will forge a path through the valley of darkness that is childhood cancer, and up to the summit of the mountain that is cure and survival. One day soon, we will stand on that mountain top, and celebrate the vibrant young lives saved by our endeavours.

“I wish all participants at this meeting fruitful deliberations and God’s wisdom as we chart this new and exciting course. I believe in miracles and in your miraculous minds, hearts and hands that are going to take our country towards the beautiful mountain summit that is the end of avoidable suffering from retinoblastoma.”


OVERVIEW OF CONFERENCE

Launch CeremonyTwo years of discussions with dedicated medical teams across Kenya led to the formation of a multidisciplinary group of professionals and lay people who share the goal of improving retinoblastoma care across the country. The first annual meeting marked the formal beginning of a collective effort to build a distinct path ahead for affected children and families. This momentous occasion was celebrated at the official launch ceremony of the KNRbS.

Brian Ouma, Chief Executive Officer of DECF-Kenya, opened the ceremony with a stirring speech that filled the room with hope and encouragement. The Directors of DECF-Kenya then each spoke, praising the delegates for their dedication to retinoblastoma.

Abby White, co-founder of DECF, remembered her father’s role in turning her focus on Africa. His birth in Kitale and diagnosis of retinoblastoma in 1946 in Nairobi steered Abby and DECF towards Kenya and her beautiful people. Sadly, he died before he could witness this project.

Brenda Gallie thanked the Canadian Institute of Health Research and the Sir Halley Stewart Trust for the supporting grants that made this meeting possible. She also praised the efforts of Canadian retinoblastoma survivor and musician, Jeff Healey, who died prematurely in March 2008, and the continuing support of the KNRbS offered by his family, friends and dedicated fans.

From the start, the KNRbS has welcomed the involvement of the Kenyan Ministry of Health (MoH). Prof. Anyang Nyongo, Minister of Medical Services, highlighted the burdens that advanced retinoblastoma places on families and hospitals. He acknowledged that although this cancer is rare, it has a very high potential for cure when d iagnosed ear ly and t reated appropriately. He asserted that the KNRbS will play a key role in Kenya’s National Eye Care Strategic Plan 2005-2010, and pledged the Ministry’s full support of the effort to build a c o m p r e h e n s i v e r e t i n o b l a s t o m a management plan.

The ceremony concluded with the cutting of a special cake bearing the DECF logo. Especially symbolic was the joining of hands of patients, representatives of the Ministry of Medical Services, KNRbS and DECF, to cut the cake, while delegates applauded.


CONTINUING EDUCATION LECTURES

Situation of Retinoblastoma in KenyaDr. Kahaki Kimani acutely focused attention with her overview of retinoblastoma in Kenya. Approximately 60-80% of ophthalmology beds at KNH - the country’s main treatment centre – are occupied by children with retinoblastoma. Yet among these children, three-year survival from diagnosis is just 26%. Most children arrive at KNH with advanced disease due to late presentation to primary health centres, and slow referral to specialist medical care.

Optimal care in retinoblastomaDr. Brenda Gallie’s discussion of optimal care in retinoblastoma showed how increased survival can be achieved in resource-limited settings by investing in key areas such as raising awareness, comprehensive pathology, agreed clinical care protocols and support for families. Her presentation marked an important threshold in the meeting, as the focus shifted from challenges and needs, to realistic, sustainable solutions.

Best Practice Guidelines for retinoblastoma Helen Dimaras, PhD, discussed the development of Best Practice Guidelines for retinoblastoma in Canada, and the opportunities of such an approach to retinoblastoma management in Kenya. She presented the process of guideline development from initial research and writing, to external review, publication and dissemination. Using sample recommendations from the Canadian Guidelines, she examined referral protocols, defining components of Secondary and Tertiary Retinoblastoma Centres, medical management and follow up care.


Introduction to Child Life and it’s value in retinoblastoma careMorgan Livingstone, CCLS, CIMI, introduced the concept of child life and its value in retinoblastoma care. She demonstrated the use of simple language and comfort positions that can be easily implemented in daily medical practice to support the child through medical procedures, and highlighted the capacity of child life to reduce medical bills by limiting need for sedation/anaesthesia during certain procedures. She also reported on the well-received pilot training program for parents and medical staff, held the previous week at the Sally Test Paediat r ic Centre in Eldoret , and her photographs from the event clearly illustrated the power of child life to improve the child’s hospital experience.

Internet Connectivity for Retinoblastoma Dr. Brenda Gallie demonstrated how an online record keeping system, eCancerCareRB, can track staging, examination and treatment of individual patients. She described the different retinoblastoma staging systems - the International Intraocular Retinoblastoma Classification (for tumour within the eye) and Tumour, Nodes, Metastases (TNM) classification (for tumour that has spread outside the eye) - which are key to consulting about children with retinoblastoma around the world, and to scientific progress in treatment.

She illustrated how drawings of the retina and tumours and the digital images of the tumours are very important to define eye and tumour status. When these are available to the whole multidisciplinary team caring for the child, collaborative care is facilitated and treatment can be more accurate and appropriate. Finally, she highlighted the capacity of eCancerCareRB to connect Secondary and Tertiary Centres via a centralized National Retinoblastoma Registry, a future vision for collaborative shared care of individual children across Kenya.


SITUATION ANALYSISA national situation analysis was carried out to identify existing resources for retinoblastoma care and challenges to survival across Kenya. All provinces were represented at the meeting. Delegates worked in three regional groups to assess the current state of retinoblastoma care in the Eastern, Central and Western regions of Kenya.

Following the situation analysis at a regional level, the entire KNRbS Group reconvened to collate these findings and identified common challenges requiring further concentrated discussion.

Approaches to optimal care in retinoblastoma

In response to the situation analysis, four groups focused intensively on (1) awareness, (2) medical care, (3) family support and (4) resource mobilization. Each group included physicians, clinical officers, nurses, family members and other lay people. The cross-country, multidisciplinary representation aided solid discussion. Priority needs were identified, and a range of potential solutions were put forward and vigorously debated.

Each Focus Group presented its discussions to the whole KNRbS Group, leading to further discussion. Consensus was reached on identified priority areas of need.

Way forward and approaches to communication for project development

Each Focus Group set three measurable goals for the coming year, based on their comprehensive discussions during the meeting. Task forces were established within each group to develop these projects and meet the agreed goals. The groups also discussed approaches to connecting with one another between meetings. Email was identified across all groups as the preferred mode of communication.

Following the break-out session, identified goals were discussed by the entire KNRbS group on the final morning of the meeting. Further opportunities for implementation were presented during these discussions, and some goals were slightly altered for greater impact and sustainability.


Existing resources for retinoblastoma care

During the national situation analysis, delegates identified existing resources for retinoblastoma management, and areas of limited or non-existent activity.

A comprehensive map gradually emerged, highlighting the resources that already exist for the diagnosis and treatment of retinoblastoma. (See Table and Maps below)

Table: Treatment modalities available at KNRbS Partner Hospitals.


No region could identify established awareness programs, though limited education of medical professionals has been observed on an ad hoc basis during eye health training sessions.

Care of the child and family was also extremely limited. Established hospital play facilities were found only in Eldoret, through the Sally Test Paediatric Centre. Though referral hospitals provide accommodation for parents on the ward, this is offered only to parents of children under three years old, and most families cannot afford the cost.


People travel from all corners of Kenya to work together to achieve a

strategy for children with retinoblastoma

CHALLENGES IDENTIFIED IN MANAGEMENT OF RETINOBLASTOMAThe principle challenges experienced by retinoblastoma families are observed in every region. Ten major areas of concern were identified, as suggested by our 2007 DECF tour of Kenya’s main retinoblastoma centres.

1. Low awareness, leading to late presentation and advanced disease.

2. A chaotic referral process and lack of communication between peripheral and referral centres.

3. Lack of a standard staging system or management protocol.

4. Limited availability and high cost of retinoblastoma specific chemotherapy.

5. Delayed and inadequate histopathology reports.

6. Parents’ inability to pay for travel to referral centres or specialist treatment.

7. Lack of clear information for parents, limited consultation time with medical staff, and lack of genetic counselling, leading to uninformed decision making and often refusal of therapy.

8. No psychosocial support for patients and their families.

9. Poor availablility of cosmetic rehabilitation, e.g. prosthesis and orbital implants after enucleation.

10.Lack of follow up due to limited understanding of the need, and costs of medical bills, travel and accommodation.


FOCUS GROUPSEach Focus Group identified Challenges, Opportunities and ACTIONS Actions for 2008-9. Each group formed task forces of named individuals to work on achieving the identified Actions.

AWARENESS FOCUS GROUP

ChallengesLimited awareness of retinoblastoma

Low awareness means children present late to medical centres and many have severely advanced disease at diagnosis. When parents do bring their children, referral and diagnosis are often delayed by lack of retinoblastoma awareness among health workers. Although posters have been distributed at a regional level by DECF, there are currently no systematic awareness programs for retinoblastoma in Kenya.

Opportunities National awareness campaign

Both teaching on the importance of leukocoria and strabismus as the earliest signs of retinoblastoma will be highlighted, with emphasis on children under 5 years of age. After much debate, it was concluded that existing medical systems would adequately cope with an increase in non-retinoblastoma strabismus referrals which may arise from the campaign.

Target groups

Medical professionals

Education about retinoblastoma is very important for rural health workers, nurses in Maternal and Child Health and clinicians at all levels of health care. An awareness campaign should also include the private sector and cover all cadres of eye care, including opticians.

Knowledge and information can be disseminated to all levels of health care through existing structures. For level I and II health centres (primary health care and district hospitals), mechanisms include Continuing Medical Education (CME) sessions, reports and monthly meetings with District Health Management Teams. For levels II and above (provincial, specialist and referral hospitals), CME and other seminars are likely to provide the best opportunities for knowledge transfer.

The public

Within the community, awareness campaigns will target community workers and leaders, nursery school teachers, and women’s and religious groups that provide services to children and families.


Awareness materials

Both verbal and written forms of information about retinoblastoma will encourage medical s ta ff to check ch i ldren ’s eyes, and disseminate knowledge of retinoblastoma to parents at postnatal and regular visits.

Public awareness poster

Posters can be displayed in ophthalmic, paediatric, maternal and child health clinics. They may be most effective in conjunction with parallel awareness materials in waiting areas for families, and in staff areas for physicians and nurses. Provision of take-home brochures for families may also be bene f i c i a l t o sp read know ledge o f retinoblastoma in the wider community.

The current poster was adapted to contain fewer words and make the image more prominent. This poster can be used in the primary health care setting, as well as in public places and in waiting areas at all levels of health care.

SeeRed poster for health workers

This poster provides very important information for medical professionals, including good practice in ophthalmoscope examination of eyes for the normal red retinal reflex. However, it requires some careful adaptation for use in Kenya, since many primary health workers do not have access to an ophthalmoscope. The poster should also include a picture of a nurse with mother and child, since many primary health centres are operated by a single nurse.

Information leaflet

Supplementary information sheets, currently printed on the reverse of the SeeRed posters, can be developed into take- home leaflets for medical professionals and the public. These can be placed in health clinics where the posters are displayed.

The Maternal and Child Health booklet

The Maternal and Child Health booklet presents an ideal vehicle for systematic distribution of information about retinoblastoma and its early signs. This publication is compiled and revised annually by the Ministry of Health, and is provided to all registered health centres in Kenya. Parents also receive a copy when they attend infant vaccination clinics. Inclusion of text and photographic information about retinoblastoma can provide a clearly understood message in a format accessible to all.


Focused campaigns

World Retinoblastoma Awareness Week starts the second Sunday in May each year, aiming to promote awareness of white pupil as an early feature of childhood eye cancer. The twice-yearly Kenyan Malezi Bora Week encourages parents to routinely bring children under five years of age to their local health clinic. ‘Malezi bora’ means ‘good nurturing’ in Swahili, and the week attracts much media support.

The wearing (and explanation) of the Childhood Cancer Gold Ribbon may be a powerful way to highlight retinoblastoma, just as the red ribbon has helped to raise awareness of HIV/AIDS. We can encourage news anchors, journalists and other public figures and celebrities to promote the gold ribbon during International Children’s Cancer Day (15 February) and Childhood Cancer Month (informally known as “Gold Ribbon Month”) in September, as well as World Retinoblastoma Awareness Week, and Malezi Bora Week.

Involve the media

Engaging the media to promote awareness of retinoblastoma, and especially white pupil, was felt to be a powerful opportunity in Kenya. Many Kenyan publications welcome the submission of articles written by professionals, on matters of broad public interest. These publications include daily newspapers, journals and media websites.

A range of popular television and radio talk shows focus on health care, and welcome the opportunity to interview people about little-known medical conditions. For retinoblastoma, potential interviewees may include medical professionals, parents and survivors.

The media will be an important partner to highlight the Kenyan Retinoblastoma Strategy to the corporate world, prominent figures such as politicians and celebrities, and at community action events.


AWARENESS ACTIONSTask 1: Maternal and Child Health Booklet

We will develop text and photographic material for inclusion in the MoH information booklet by 2010. Photographs will feature both leukocoria and squint in children with retinoblastoma. This task will be carried out in partnership with the Department of Ophthalmic Services.

Task 2: Awareness Posters

We will reproduce the simple poster developed during our breakout sessions for circulation across Kenya, and seek MoH endorsement of the poster. We will adapt the SeeRed poster for use in the Kenyan primary health care setting, and edit the accompanying information sheets for distribution as supplementary brochures. We will work with the Department of Ophthalmic Services (DOS) and the Health Informatics Department to achieve these goals.

Task 3: Sensitization of Health Workers

We will provide feedback to District Health Management Teams (DHMTs) about retinoblastoma. We will work with the Health Informatics Department and DHMTs to identify a calendar of opportunities for dissemination of retinoblastoma awareness through Continuing Medical Education sessions for workers in Maternal and Child Health and frontline hospital staff.

Task 4: Public Awareness

We will actively engage in Retinoblastoma Awareness Week, and aim to achieve coverage in the print and audio-visual media during that event.


MEDICAL CARE WORKING GROUP

Referral and DiagnosisChallenges

There is currently no protocol to guide physicians who become suspicious that a child has retinoblastoma. Consequently, accurate diagnosis and commencement of therapy are frequently delayed. Some children, who could be treated closer to home with simple surgery to remove the diseased eye, are referred far from home, often from one centre to the next.

Clinical and pathological staging of retinoblastoma is non-existent, undermining collaboration and an evidence-based approach to therapy.

In many cases, several examinations under anaesthesia (EUA) are carried out when one would be sufficient. Often, examination is carried out only for the eye showing symptoms, and a second EUA is organised to remove the affected eye. Lumbar puncture and bone marrow aspirate, required in cases of advanced retinoblastoma, are not routinely done during EUA. These procedures can be traumatic for the conscious child.

Over-stretched medical personnel have little time or depth of specific knowledge to adequately counsel families during the referral process and at diagnosis. Complete history is often difficult to obtain when parents fear they will be blamed for delaying medical care. Genetic counselling is rarely offered, and examination of at-risk siblings is limited or non-existent for most families.

Investigations such as ultrasound and computerized tomography (CT) are often ordered even when they are not essential. This necessitates referral to a regional centre, delaying surgery for simple unilateral retinoblastoma. CT is also routinely ordered for cases of advanced extraocular disease, delaying commencement of palliative therapy.

Clinical and pathological staging of retinoblastoma is required to aid development of an individualised management plan. Staging each eye and each child will also support research that can shape future medical care.

Opportunities

Clear identification of health care centres that can treat simple unilateral disease with enucleation, and those which have capacity to treat more complex disease, will facilitate

appropriate referral when primary and secondary level health workers suspect retinoblastoma. During the meeting, we developed a referral flow guideline (See below).

Complete management guidelines for all stages of retinoblastoma care, as has been done for Canada (Canadian Retinoblastoma Guidelines, in preparation) will inform effective management of each individual child. Such guidelines will avoid unnecessary delays and costs, and reduce the number of required anaesthetics.


PathologyChallenges

Pertinent clinical information is not included in current pathology request forms. There is no standard request or reporting form for retinoblastoma, and final reports provide only limited information that is not helpful in guiding clinical management.

Turn-around-times for pathology reports of enucleated eyes are frequently longer than one month, which then delays development of a management plan. The cost of pathological examination is prohibitive for some families and inhibits a rapid turn-around for many more families.

Opportunities

Standard request and reporting forms for retinoblastoma will guide pathologists in the examination of enucleated eyes and the key features needed to plan effective therapy. Since pathology is key to an informed management plan for the individual child, an agreed standard for content and turn-around-times for final reports will be helpful.

A Kenyan collaborative retinoblastoma diagnostic initiative can both improve quality of care and address costs for families.

Medical ManagementChallenges

Though enucleation is routine worldwide for unilateral disease when the other eye is normal, refusal of consent is a major barrier to effective care. There is no established contingency plan for this situation. Very limited time is available to medical professionals to support the family so that they can make informed decisions.

Shell conformers and artificial eyes are not routinely supplied. Though prosthetics are available at very low cost, many families are not aware of this service. Eyes are not custom fit, and the current process of selecting and fitting eyes is not sensitive to the needs of the child or parent.

Retinoblastoma-specific chemotherapy drugs are expensive, and their supply is unreliable. The combinations currently used are not ideal, though they have some impact in palliative disease control.

External beam radiotherapy is currently used only for management of orbital disease. Brachytherapy (plaque) is not currently available due to the logistics of importing radioactive material to Kenya.

Though encouraged by the medical team, serial examinations following treatment are not routine. Regular follow-up is severely compromised by poverty, lack of family support and limited parental understanding of the need for this monitoring.

There is no protocol for the palliative management of retinoblastoma. Chemotherapy as part of a palliative program may be useful, but is hard to access and depends on supportive care, which is hard to achieve. Pain management in the home is difficult due to limited availability of appropriate analgesics in the community. Although ten hospice care services exist across Kenya, referral is not standard, and there is limited administrative support for families to access such care.


Opportunities

Design of realistic protocols for cure and palliation will improve patient care. An organised effort to secure a reliable supply of drugs at an affordable cost will facilitate provision of the global standard Carboplatin, Etoposide, and Vincristine (CEV) for retinoblastoma.

Efforts need to be increased to facilitate routine use of implants and shell conformers, and artificial eyes will promote the rehabilitation of children following eye removal surgery. There may be options for local custom alteration of stock eyes.

A complete palliative management protocol for children with advanced disease will relieve much suffering when the child cannot be cured. This would include palliative, short-term chemotherapy, radiotherapy and pain management. Families will appreciate information, emotional support and referral to hospice care when this is available. Wherever possible, the best approach may be support of the child and family in the home environment.

Assistance to enable regular follow-up beyond treatment will include information and practical travel and accommodation support. Collaborative organization for children with retinoblastoma across Kenya may facilitate this.

MEDICAL CARE ACTIONSTask 1: Management Protocol

We undertake to design a comprehensive management protocol for retinoblastoma, with the first draft complete for presentation at the 2009 KNRbS meeting.

Task 2: Pathology Request and Reporting Forms

We undertake to design pathology request and reporting forms to support pathologists dealing with retinoblastoma in Kenya.

We undertake to develop a Retinoblastoma Collaborative Diagnostic Service in support of quality care, useful turn-around-times, and accessible cost.

Task 3: Treatment Protocols

We undertake to design protocols for cure, and protocols for palliation. These protocols will include details of drugs, doses, schedules, monitoring and follow up. We undertake to present the first draft at the 2009 KNRbS meeting.

We undertake to work with the Kenya Medical Supplies Agency and relevant pharmaceutical companies to source a reliable supply of appropriate drugs at a reasonable cost.


FAMILY SUPPORT FOCUS GROUP

Accessing Medical CareChallenges

Communication

Lack of knowledge about childhood cancer in general, and retinoblastoma in particular, leads to delays in seeking medical advice. Absence of pain or apparent vision loss leads families to dismiss any concerns.

Mothers are often the first to notice a problem with the eye, but a lack of female empowerment to seek medical help contributes to delayed presentation. Cultural beliefs in some communities define illness as a “curse” or “punishment for sins of the parents”, and may impede seeking medical advice. Medical care may be prioritized for boys, with less health care access for girls in some communities.

When a suspicion or certainty of retinoblastoma is established, poverty often delays specialist examination and treatment. Lack of disposable income may block referral to a centre far from home. Lethal delays from diagnosis to treatment are too common.

Transport and accommodation

In remote areas of Kenya, and particularly in the northern region, reliable, affordable travel is frequently unavailable. When children are discharged from hospital between treatments, they often return home on dusty, overcrowded buses. This increases the risk of developing infections while their immune systems are compromised by chemotherapy.

There is frequently no communication between the peripheral and referral centre prior to admission at the referral centre. Often, admission is not immediately possible when the family arrives in the city, sometimes leading to an indefinite state of homelessness. This may eventually lead to abandonment of the referral.

In some centres, parents of children younger than three years of age are offered accommodation and daily meals on the ward. However, many families cannot afford the extra costs, and for the parents of children older than t h r e e y e a r s , t h e r e i s n o a c c o m m o d a t i o n a v a i l a b l e . Children must be left alone in hospital while the parents return home. Sometimes this leads to the child being abandoned by their parents. When parents do stay in town, they may find themselves “sleeping rough” in order to remain close to their hospitalised child, somet imes wi th the i r o ther children in tow.


Medical Bills

The costs of hospitalisation, investigations, surgery, chemotherapy and other drugs mount up fast. These costs are beyond the means of most families, who also lack capacity to source financial support. Sponsorship is rare and ad hoc. Delays further compound the intensity of therapy required, and costs escalate.

Children may experience medically unnecessary hospitalisation simply because the family cannot afford to travel for each treatment session. Medical bills accumulate with the inability to pay. Children, who could go home between treatments, or at end of treatment, may be held at the hospital until payment is received. The downward spiral forces some families to abandon their child, a disastrous outcome for child, family and the institutions involved.

Opportunities

Practical Support

Clear, transparent guidelines, and assistance in accessing statutory funds and completing other administrative necessities, could derive some financial assistance for families in financial difficulty as a result of retinoblastoma. Small grants to meet transport costs, networking between families and advocacy for appropriate transport could ensure that t reatment is not delayed, refused or abandoned for financial reasons. Signposting and administrative support will help families access specialized palliative care, when their children are not curable.

Assistance in managing the care of children remaining at home, and facilitated links between family members at the hospital and those remaining at home, could encourage follow-through with difficult treatment paths.

Family accommodation

The development of an alternative to hospital admission that enables the family to remain together may actually reduce costs, not only for families, but also for institutions. Parents can care for their children, close to the medical resources the child needs.

A purpose-built family house would not only accommodate families, but could also provide space for play, education, relaxation and spiritual healing. Small innovative earning opportunities at the house could help parents develop other resources for their child.

Plans could incorporate space for practical support and rehabilitation services, and an on-site childhood cancer resource centre for both the general public and health care professionals.


InformationChallenges

Where information is available, it is frequently delivered in a rush, and parents feel threatened by the experience, rather than supported. Limited time means parents have no opportunity to ask questions at the crucial times concerning diagnosis, treatment and prognosis. This situation is compounded by a lack of alternative sources of information regarding retinoblastoma and its treatment. Consequently, consent is rarely informed, and parents may refuse treatment based on a limited understanding of the situation.

Information for the children themselves, before, during and after treatment and preparation procedures is rarely considered. This means children are often frightened and unable to co-operate in their medical care, further escalating costs.

Opportunities

Information for families

A thorough explanation, beginning with the diagnosis, will empower the parent as a strong advocate and informed decision maker for their child with suspected or diagnosed retinoblastoma. Explanations of what retinoblastoma is, what causes it (especially allaying fears of it being “my fault”), the diagnostic process, the recommended medical care and prognosis with and without prompt treatment, may help. Information is most effective when provided in appropriate language for parents or children and siblings.

Information for parents and adult survivors, will also address genetic implications of this cancer, and importance of screening for young children at risk.

Repeated information will gradually become easier to understand, remember and explain to other family members. Photographs of children before and after treatment may help parents to understand that prompt medical care can save the child’s life, and that the child will still be beautiful after removal of an eye.

Information can be shared across the extended family, and ultimately the wider community. General public awareness about retinoblastoma, its treatment and consequences will grow.

When parents wish to seek medical care in another country, clear guidance should be given to ensure an optimal outcome for the child. Discussions should include signposting to appropriate centres with the required resources, realistic treatment options and durations involved, and the prognostic implications of delaying treatment while seeking international care. Wherever possible, collaboration facilitated by the local caregivers will aid in processing of paperwork and avoid unnecessary delays.

The financial costs of international travel, daily living and treatment should be thoroughly disclosed by all involved institutions and medical professionals. The implications of delaying treatment while gathering the necessary funds, and the ability to fund essential intensive follow-up care beyond treatment, must also be thoroughly discussed.

Information for medical staff

Medical professionals can benefit from specific guidance and training to support them in effectively meeting the psychosocial needs of young patients and their families. This information should include the emotional needs of children and parents under stress, and effective solutions that can be easily implemented into day-to-day practice.


Psychosocial careChallenges

Busy doctors and nurses have limited time to address the needs of the whole person. Parents feel this often translates to a view of the patient as “a cancer to be cured” rather than “a child who has cancer and needs care”. Many parents fear mutilation of their child by eye removal surgery, and the stigma associated with an empty eye socket. They have little opportunity to express these fears in a safe environment, or discuss them with the medical team or parents who have been through the same experience.

The physical lack of private consultation space increases the difficulty parents feel in asking questions, and poses concerns about confidentiality. Language can often be a barrier during consultations, both in relation to mother-tongue and unfamiliar medical terms.

There is no preparation, orientation or support for families arriving in the city from rural communities. Parents often have no friends or contacts, no knowledge of the city’s geography or culture, and nowhere safe and welcoming to stay. This decreases the family’s ability to cope effectively with the experience of their child’s cancer.

Parents feel children are often ‘forced’ through procedures, and uncooperative children are threatened into submission, leading to fear and even less cooperation at the next procedure.

Hospitalisation is routine when poverty impacts the family’s ability to attend each treatment session. Admission may ensure compliance with therapy, but deprives the child of a loving, family environment at a crucial stage in their personal development. There are minimal existing spaces or materials to support play that stimulates child development and promotes wellbeing of the child patient.

OpportunitiesPsychosocial Care

Medical personnel must understand and respect the needs of affected families. They should be empathetic, patient listeners, and empower the family to be good advocates for their child by helping them to understand the complexities of the medical situation and its required procedures. They should be careful to avoid apportioning blame or stimulating guilt, and should actively offer signposting to sources of information and support.

Wherever possible, consultations should take place in private to uphold confidentiality and enable the family freedom to discuss their child’s care openly.

All members of the medical team need to remember that the child takes priority over the cancer, and that the cancer experience slows child development and reduces the child’s ability to cope with challenging situations. They should take every opportunity to support development of the whole child, and protect the emotional wellbeing of the child during medical procedures and hospitalisation. This includes the use of medical preparation play and simple child-focused language. Simple child-focused language can be used to engage and support the child and ensure their wellbeing during procedures.

Families need opportunities to communicate with others who have been through a similar experience. This family-to-family contact can encourage families yet to undergo enucleation surgery, while emphasising that retinoblastoma can be cured, and that a good quality of life is possible beyond treatment.


Families also need private space and recreation opportunities when their children are hospitalised. This helps to maintain a calm mind, quality of life and normalcy as much as possible during a very stressful time.

Family Support Group

A retinoblastoma family support group would be able to meet many needs that are currently unmet. Family to family support can be initiated through a national register of families willing to share their experiences. The group could also provide emotional support for parents at the referral hospital through funding and training of a Ward Mother. Similarly, a parent-run helpdesk at the hospital, or a telephone support line, could be implemented.

The family group could work in partnership with Daisy’s Eye Cancer Fund to develop parent-friendly information leaflets detailing different stages of diagnosis, treatment and follow up, and sources of assistance. This information could then be translated as necessary and provided as print documents and resource paces within the DECF website.

Child Life ProgramStaff training in child life approaches can facilitate effective support of the child patient and other family members. This training can encompass infant massage, non-pharmacological pain management, child friendly language, medical play for procedures, positions for comfort and family education. Such a program could incorporate the training of individuals to become child life trainers and advocates within the local medical community.

FAMILY SUPPORT ACTIONSTask 1: Information Support

We undertake to establish a family support group for Kenya. We plan to form an organising committee and host at least one family-focused event before the 2009 KNRbS meeting.

Task 2: Child Life Initiative

We undertake to identify four Child Life Leaders in Health Care, to be located in Nairobi, Eldoret, Mombasa and Kisumu, before the 2009 KNRbS meeting.

We undertake to oversee collaborative development of a curriculum for Child Life training of families and medical professionals, to be presented at the 2009 KNRbS meeting.

Task 3: Accommodation

We undertake to formulate a project and business plan for the development of a purpose-built accommodation facility in Nairobi, to meet the practical, emotional an informational needs of families seeking childhood cancer care at any Nairobi area hospital. We aim to establish an advisory panel within one year, and present initial concepts at the 2009 KNRbS meeting.


RESOURCE MOBILIZATION FOCUS GROUP

ChallengesResources to address the needs of children and families with retinoblastoma have not been available in Kenya. While the core components of care (removal of eyes with retinoblastoma and pathological examination to support rational treatment plans) are available in Kenya, absence of focus, coordination and collaboration have severely impacted the survival of affected children.

OpportunitiesDECF brought to Kenya the seed that has grown into a Kenyan-based initiative to change outcomes for Kenyan children affected by retinoblastoma. The power and enthusiasm to achieve change was clear at the KNRbS meeting. Most importantly, the recognition of the Challenges defined in many areas by the other Working Groups is accompanied by the determination of the Resource Mobilization Working Group to empower their Opportunities.

Research

Valid data can clearly demonstrate Kenya’s retinoblastoma burden and is necessary to rally resources. Especially important are the most accurate numbers of diagnosed children, hospital admissions, costs of medical care, financial impact of delayed diagnosis/treatment, social impact of retinoblastoma and implications for quality of life. Thus the first target for research is scientific data on the current situation.

Awareness

Awareness campaigns targeting community and health worker education, stigma prevention and media mobilisation are also opportunities to marshal resources. Delayed diagnosis and treatment is by far the most important challenge to overcome in achieving a reduction in mortality from retinoblastoma. Therefore the Awareness priorities are prime targets for resource mobilization.

Education/training

Depending on their roles, doctors, clinical officers, nurses, pharmacists, pathologists, community health workers and policy makers at all levels of health care will delineate innovative ways to raise resources when they are educated about the strategy and issues of retinoblastoma.

Medical Care

Support is required for the development of best practice guidelines, realistic treatment protocols and a national retinoblastoma pathology service, and for a co-ordinated effort to secure retinoblastoma specific chemotherapy drugs at an affordable cost. Capacity building within identified specialist centres can be extended depending of resources.

Family Support

A major factor in poor outcomes for the children with retinoblastoma in Kenya is non-existent family support. Significant investment is required in building structures to support provision of information, administrative assistance, transport and accommodation and nutritional health during treatment. Additionally, investment is needed to facilitate effective follow-up care and rehabilitation of the child, particularly access to education when vision is lost in both eyes.


Partnerships The KNRbS is a program of DECF. Both DECF International and DECF-Kenya are committed to effective networking and project marketing, as well as sustainable income generation through local partnerships and fundraising events.

The efficient assimilation of statistical data can be achieved through a team effort involving institutions such as the Kenya Medical Research Institute (KEMRI), MoH, universities and hospitals. Backing can be sought from grant making organisations that maintain a particular interest in global health and eye health research.

Partnership with health workers at all levels will facilitate effective awareness-raising and ultimately earlier diagnosis. Particularly important is collaboration with the Kenya Expanded Program on Immunisation (KEPI), Maternal and Child Health (MCH) and District Health Management Teams (DHMT).

Community based awareness and stigma prevention will benefit from the building of a strong relationship with the media. The message of white pupil will be disseminated further through collaboration with retail chains, transport and telecommunication industries.

Training/Education

DECF has already established a working relationship with the University of Nairobi and Moi Teaching and Referral Hospital (MTRH). Partnership with these institutions and the MoH will strengthen the formulation and delivery of specialist curricula such as clinical diagnosis of retinoblastoma and child life techniques. Forming alliances with medical libraries and information hubs will increase the opportunities for education.

Family Support

A comprehensive, family support program involves many different elements that have the capacity to attract a wide range of partnerships for development. From faith based organizations, community groups and individuals to local government, charitable organisations and corporate investors, both large and small collaborations will play important roles in building sustainable support for families affected by retinoblastoma – and ultimately other types of childhood cancer.

Medical care

Close collaboration with the Kenya Medical Supplies Agency (KEMSA) and pharmaceutical companies will open up opportunities to secure a reliable supply of retinoblastoma specific chemotherapy drugs at affordable prices. Partnership with corporate supporters, grant making organisations, local government programs and faith-based organisations will also strengthen the capacity at identified specialist centres.


RESOURCE MOBILIZATION ACTIONSTask 1: Baseline Retinoblastoma Data

We undertake to establish baseline data on retinoblastoma by collecting anonymous retrospective patient information through chart review at KNH, Kikuyu Eye Unit, MTRH, Sabatia Eye Hospital and Lighthouse for Christ Eye Centre.

We undertake to develop a research plan, obtain ethics approval and begin gathering data before the 2009 KNRbS meeting.

Task 2: Partnership Development

We undertake to actively seek out potential partners for the sustainable future of the KNRbS.

We undertake to present at least two newly formed partnerships to the 2009 KNRbS meeting.

Task 3: Fundraising.

We undertake to develop a realistic fundraising strategy for presentation to the 2009 KNRbS meeting, and also to present at least one significant fundraising event before this meeting.


NEXT STEPS

Specialist CentresHospitals across Kenya offer different elements of therapy for retinoblastoma care. The country’s excellent eye care facilities can efficiently carry out eye-removal surgery. In the future, vision salvage therapies will be more important as awareness leads to earlier diagnosis. Few children currently present in Kenya with tumours small enough to treat with laser or cryotherapy. These focal therapies are most frequently used in combination with chemotherapy to treat retinoblastoma contained in the eye.

During the meeting, two hospitals emerged as having the capacity to develop rapidly into dedicated tertiary centres for the specialist management of retinoblastoma. These centres are public hospitals, offering more affordable care to most Kenyan citizens than the very high quality private facilities.

Kenyatta National Hospital (KNH) in Nairobi is currently the only centre with sufficient resources to offer comprehensive retinoblastoma therapy, including eye salvage therapy when tumours are small enough to treat without removing the eye.

Moi Teaching and Referral Hospital (MTRH) in Eldoret has a strong and dedicated group of doctors who care for children with retinoblastoma, and can already offer chemotherapy for management of retinoblastoma. With the addition of cryotherapy, the hospital will also be able to provide vision salvage therapy.

These two centres offer encouraging opportunities for children in Kenya. However, much concern was expressed about the lack of comprehensive facilities in the east of the country, and the distances families from this region must travel to access therapy beyond simple eye removal.

Bearing this in mind, the KNRbS has identified Mombasa as the site for development of a third tertiary centre. The aim will be to introduce chemotherapy for retinoblastoma to Coast Provincial General Hospital over the next five years, with the possibility of developing focal therapy either at the same site or in partnership with Lighthouse for Christ Eye Centre, which is located across the street.

Although Aga Khan University Hospital (AKUH) in Nairobi has strong potential to develop as a retinoblastoma centre, many families in Kenya cannot afford the private health care offered at this excellent centre. However, the hospital’s dedicated physicians within our KNRbS Group will continue to make important contributions to the development of the National Strategy.

Resource Mobilisation Advisory GroupAn individual from each of the first three Focus Groups (Awareness, Medical Care and Family Support) was elected to act as advisor to the Resource Mobilisation Focus Group. These advisors will keep the group informed about task developments and resource needs, so that effective partnerships can be formed to meet the changing needs of the whole KNRbS.


Steering CommitteeOn Sunday September 21st, a nine member Steering Committee was appointed to oversee development of the KNRbS, its varied projects and annual meetings.

Chaired by Dr. Kahaki Kimani, the committee is a multidisciplinary team representing the DOS of the MoH, ophthalmology, pathology, pharmacy, family support and DECF. The identified specialist centres of KNH and MTRH are also represented, as are Coast Provincial Hospital and Lighthouse for Christ Eye Centre.

The following individuals were appointed to the Steering Committee:

Dr. Kahaki Kimani (Chairman), KNH

Dr. Michael Gichangi, DOS, MoH

Mr. Brian Ouma, Chief Executive Officer, DECF-Kenya

Dr. Elizabeth Dimba, Pathologist, University of Nairobi

Dr. Ibrahim Matende, Director, Lighthouse for Christ Eye Centre

Dr. Victor Kipyegon, Pharmacist, MTRH

Dr. Fathiya Hammumy, Pharmacist, Coast Provincial Hospital

Mrs Sarah Ellen Mamlin, Director, Sally Test Paediatric Centre, MTRH

Ms Abby White, Chief Executive, DECF-International

The mandate of the steering committee is co-ordination of the KNRbS activities, to act as an Advisory Board for organization of KNRbS Annual Meetings, and to guide decisions of the DECF-Kenya Board of Directors which relate to the KNRbS.

The committee will meet every four months, utilizing telephone conferencing facilities to overcome the challenges of their geographical distribution.

Next MeetingExtensive discussions considered the significance of various ophthalmic meetings due to take place in Kenya and internationally during August and September 2009. The 2009 meeting of the KNRbS Group was tentatively set for the fourth week of August, 2009.

The location of the meeting was debated. There was general agreement that, as far as possible, the meeting should rotate between the vicinities of Nairobi, Eldoret and Mombasa. Mombasa was examined as a potential venue for the 2009 meeting.

The date and location of the 2009 meeting will be confirmed in March 2009.


CONCLUSIONSThe overarching objective of this meeting was formulation of a realistic strategy to address poor retinoblastoma outcomes in Kenya. In just three days, finite goals were set to move the KNRbS forward through the coming year.

Some casual observers wonder why we invest in caring for these children, when so many die. Yet the diagnosis of retinoblastoma makes the child’s life no less valuable than that of a child with malaria or HIV, and the opportunities to protect the life of that child are no less real.

The challenges, needs and opportunities identified during our meeting illustrate how the future can be recast for children and families affected by retinoblastoma in Kenya. They acknowledge the very significant challenges to be overcome, but they also paint a vibrant picture of what can be achieved – a vision full of hope and possibility. The agreed ACTION tasks lay out a clear path toward that brighter future.

The KNRbS begins with awareness of retinoblastoma. Comprehensive awareness that can achieve early diagnosis - a child’s only hope of cure in Africa. From grass-roots to tertiary health care, tasks will build systemic knowledge of the early signs, and encourage action when suspicion is established.

Development of a management protocol, strong pathology support and chemotherapy provision will increase opportunities for optimal care when children are diagnosed. They will reduce confusion and unnecessary delays, and support a collaborative working environment for all retinoblastoma teams across the country.

A family support group and child life training program will build up supportive care that meets the emotional needs of young patients and their relatives, The creation of a home-away-from-home in Nairobi will relieve pressure on hospitals and families, and enable access to specialist care without wrenching families apart.

Some of these tasks are monumental in their simplicity and will be quickly achieved. Others are large projects whose development will command great patience, determination and teamwork over many years, and significant partnerships to ensure their sustainability. All will interlink to create a sturdy national approach to retinoblastoma that supports the medical team and cares for the individual child and family.

Most significant was the lively collaboration established between staff from medical centres across Kenya, putting the needs of the child at the centre of all discussions. The KNRbS has begun to dissolve the isolation felt by many doctors and nurses caring for children with retinoblastoma in Kenya. This meeting was a vital forum, not only to examine the opportunities for building optimal retinoblastoma care in Africa, but also to strengthen the individual person. To remind each doctor, nurse and parent that they are not alone in this journey, that they hold the power - as a dedicated team - to bring about change.

An old African proverb says that when spiders’ webs unite, they can tie up a lion. As the meeting drew to a close, each delegate re-introduced the person sitting to their right, commenting on how their working relationship would benefit the KNRbS. Each delegate tied a single spool of gold ribbon (the symbol of childhood cancer) around their wrist until all delegates were connected. When Dr. Kimani pulled the ribbon, everyone felt the tug – a human web of passionate, energetic visionaries who hold the power to conquer suffering from retinoblastoma in Africa.


REFERENCES1 White A, Gallie BL and Livingstone M, Rati's Challenge: Hope for Africa. Building capacity for a local, sustainable, retinoblastoma healthcare program in Kenya, Daisy's Eye Cancer Fund, 2008.

2 White A and Gallie BL, Rati's Challenge: Retinoblastoma in Africa. Report of Visit to Kisumu, Kenya, Daisy's Eye Cancer Fund, 2007.

3 Gichigo N, Kimani K and Kariuki-Wanyoke M, 3-year survival among retinoblastoma patients treated at Kenyatta National Hospital: A retrospective audit, International Society for Genetic Eye Diseases and Retinoblastoma, Strasbourg, France, 2008.


CONTACT DETAILS

United KingdomRegistered Charity # 111-11-33

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]

Canada@ SickKids Foundation

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]

KenyaNGO Registration #: 218/051/2008/003/5038

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.

[email protected]

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


http://www.daisyseyecancerfund.org


mailto:[email protected]


http://www.daisyseyecancerfund.ca

http://www.daisyseyecancerfund.ca







Documents

Ratiʼs Challenge: A Vision for Africa international/19474-DECF-Kenya Rep… · that will build capacity to achieve health for retinoblastoma children, wherever they live. While maintaining