Retinoblastoma_Filling the gap project
Siriraj Hospital Mahidol University

A. Problem Analysis

 1. What was the problem before the implementation of the initiative?
At the Department of Ophthalmology, Siriraj Hospital Mahidol University we provide the best care for children with all kinds of eye problems. Despite well-trained medical personnel and advanced technology, children in Thailand are still dying from such a treatable diseases as eye cancer. Retinoblastoma, the most common eye cancer in children, can be cured when detected early. Once the parents notice a white reflex through the pupil (leukocoria) and bring the child in for eye examination without delay, the disease could be treated before it spreads to other organs. The incidence of new retinoblastoma patients worldwide is approximately 8,000 per year and each year 30 to 40 children are diagnosed with this disease in Thailand. Almost all patients were diagnosed before 5 years of age. The disease can occur in both boys and girls in every social group. Siriraj Hospital is one of the few centers in Thailand dedicated to treatment of retinoblastoma. More than 60 percent of the patients were referred from every part of the country as well as the neighboring countries. The goal of treatment for retinoblastoma is exactly the same as for other malignancies i.e. to save life and to maintain a good quality of living, in this condition would be to maintain useful vision in one or both eyes. Only through early detection and appropriate treatment according to the stage of the disease, could this goal be reached. In developed countries, the mortality rate of retinoblastoma is less than 5 percent. This is in contrast to our retrospective study that showed 15 percent of Thai patients died from distant metastases (Atchaneeyasakul LO, et al. Jpn J Ophthalmol 2009). The first reason for this significant number of death was the delay of diagnosis because the parents did not know what leukocoria meant and hence did not seek an eye examination right away. To make things worse, many people believe that the white glow coming out from the eye or ‘the diamond eye’ would bring good luck and fortune to the family. It would take at least 6 to 8 months up to 1 year before those children received the diagnosis of retinoblastoma. By that time, prompt surgical removal of the eye (enucleation) was inevitable. Moreover, these children would have greater risk of the tumor spreading which required an unnecessary chemoprophylaxis to prevent distant metastases. The second reason for high mortality was the delay in appropriate therapy. Once the diagnosis of eye cancer and the treatment plans were informed to the parents, some of them would prefer having their children treated traditionally, namely using holy water or herbal medicines to enucleation. In Thailand, cultural believes have been infiltrating into people’s mind and have great influence on the health care decision-making. We still have children with an advanced stage of the disease with a huge mass protruding through the orbit because the parents refuse enucleation. These children would suffer severe pain and die within a few months.

B. Strategic Approach

 2. What was the solution?
It is likely that the countries with high mortality rate of retinoblastoma share similar problems of delayed diagnosis and delayed treatment. Each organization should perform a retrospective study to identify the prognostic factors for survival of their patients. Our retrospective study indicated that the mortality rate of retinoblastoma patients in our care was higher than in developed countries. Delayed diagnosis and treatment is the main cause of avoidable deaths (Atchaneeyasakul LO, et al. Jpn J Ophthalmol 2009). This was our motivation to step forward and do something to improve patient care. We needed to be proactive. Knowledge is the best medicine. Instead of waiting for the patients to arrive to our care, we needed to spread knowledge and awareness of “leukocoria” to the public. The main objective of the ‘Filling the gap’ project is to educate teenagers who would become future parents to know the important signs of eye cancer including leukocoria, the white reflex through the pupil, and strabismus, the misalignment of the eyes. We target teenagers not only because they will become parents in the near future, but also they are the young generation who know how to connect to the world via social networks. We could encourage them to be on the lookout for abnormal eye findings. Through this approach, we believe that the information we provide would continually spread from one population to another. The project is comprised of two major parts. The ‘retinoblastoma awareness week’ is the hospital biennial campaign to increase public awareness about the disease. High-school students are invited to participate and the parents of retinoblastoma children are invited to share their experiences with the audiences. We also invite an honorable monk to bless the audiences with true knowledge instead of superstitious beliefs. During this week, we provide information about retinoblastoma through posters, videos, and pamphlets. We have well-trained medical personnel to answer questions throughout the week. Participants will learn about the epidemiology, signs and symptoms, diagnostic methods, differential diagnoses, plans of management and follow up, genetic counseling, and supportive care for patients with end stage disease. We set up a booth demonstrating the eye prosthesis, which would help people to better understand the surgical procedure to remove the eye. Finally, we provide questionnaires to measure their familiarity with retinoblastoma prior to and after attending this educational service. The activity is broadcasted through television and radio station media as well. The second part of ‘Filling the gap’ project is the ‘knowledge-to-school’ approach. We have trained our medical personnel who volunteered to join the project with an in-depth knowledge of retinoblastoma. Every 2 to 3 weeks, we have a one-hour visit to school and teach 300 to 600 high school students about leukocoria and strabismus. We show them a short movie based on a true story of a boy with ‘the diamond eye’. The movie will grab their attention and make them realize that eye cancer is closer than they might think. Then we teach them how to detect a white pupil and eye misalignment. We prepare Pre and Post questions to gauge how our presentation has changed their understanding and whether they have learned and retained the information that has been presented. We invite them to join the social networking site we created,รู้ทันมะเร็งจอตาในเด็ก. Through this channel, we will constantly share ideas and give advice when needed. We trust that once people know that a white pupil in a child could be the first sign of a deadly disease, they will not hesitate to bring their loved ones in for eye exam.

 3. How did the initiative solve the problem and improve people’s lives?
Treatment for retinoblastoma patients must be performed at tertiary care centers. Siriraj Hospital is one of the few places in Thailand that receives all stages of retinoblastoma including those with metastatic diseases. We have tried to improve the treatment plans and methods, but we still fail to save lives of many children because of the delay in diagnosis. The ‘Filling the gap’ project is a simple way to attack retinoblastoma indirectly. It addressed the main problem that was overlooked, i.e. ignorance of the disease and knowledge is the cure. The project does not involve a heavy budget. It merely requires determination and endurance. Teaching teenagers via a short movie reflecting the effect of Thai culture and believe on health care decision-making will grab their attention to the project. The key knowledge emphasized was the two main presenting signs of retinoblastoma i.e. white pupillary reflex and crossed eyes. Approaching through social networking site is an efficient way to spread out knowledge to community. People could share suspected photographs and ask questions at any time. This proactive strategy will give people the power to protect their loved ones and to be a surveillance team for their community.

C. Execution and Implementation

 4. In which ways is the initiative creative and innovative?
The first objective of our project was to make teenagers aware of the danger of white reflex in a child’s eye, which would solve the problem of delayed diagnosis. The second objective was to make teenagers understand the treatment for retinoblastoma, which would solve the problem of delayed treatment. We hope to bring this message to as many teenagers as possible. Our first team meeting started in January 2012 when we announced the ‘retinoblastoma awareness’ campaign and the title of our project, ‘Filling the gap’. We had regular meetings every two months. The list of committee and volunteers was documented and the tasks were assigned to the team. The dates were set for the first biennial ‘retinoblastoma awareness week’ during December 11 to 14, 2012. The following is the activities performed during January to December 2012. 1. Fund raising for the followings 1.1 A short movie, ‘A boy with the diamond eye’ 1.2 A movie presentation of ‘Filling the gap’ project We received the funding from parents of children with ‘Leber congenital amaurosis’. These are the parents whom their children were blind since birth and they intend to help other children to live a better life. Once they heard about our project and realized that the project was aimed to save children’s lives, they instantly offered to support us. 2. Preparation for the “Retinoblastoma awareness week” 2.1 Preparing the posters; pamphlets; video presentations of the parents interview; video demonstration of surgical removal of the eye; video demonstration of the technique to remove/insert and clean the eye prosthesis. 2.2 Designing the T-shirt logos for the project and inviting a Thai actor to be the project presenter. 2.3 Inviting the parents of retinoblastoma patients, the group of doctors taking care of retinoblastoma patients, an honorable monk, an ocularist to be guest speakers 2.4 Inviting high school students to participate in the ‘Retinoblastoma awareness week’. 2.5 Inviting the television stations, radio stations, and newspaper media to attend the ‘Retinoblastoma awareness week’. 2.6 Communicating with the hospital public relations and the area and facilities service to be involved in the project. 3. Preparing the movie scripts and casting for the film ‘A boy with the diamond eye’. During January to July 2013, the movie ‘A boy with the diamond eye’ was produced with the aim to reflect a true story that has been happening repeatedly in Thailand. We demonstrated a negative influence of Thai culture on health care decision-making. We then contacted the school administrations in Bangkok metropolitan area and its vicinity via phone calls and letters inviting them to join our project. The first ‘knowledge-to-school’ service started in August 2013. We started with the Pre-questions to assess students’ perceptions, familiarity, and knowledge in retinoblastoma. Then we showed the movie ‘A boy with the diamond eye’ followed by a PowerPoint presentation of the presenting signs and current management of retinoblastoma. Students would be able to appreciate that the unawareness could kill innocent children. Early detection and appropriate treatment, on the other hand, would save their lives. Children with retinoblastoma will grow up and live a normal life given a chance to survive the disease. Students were requested to answer the Post-questions to evaluate knowledge improvement after attending the service. We also invited them to join our social networking site,รู้ทันมะเร็งจอตาในเด็ก, where they can contact our team at any time. These students can at as a surveillance team and ask for consultations once they encounter suspicious cases. Spreading the information about our site by word-of-mouth will eventually change Thai people from an unaware to be a well-prepared community.

 5. Who implemented the initiative and what is the size of the population affected by this initiative?
Those who contributed to the design and implementation of ‘Filling the gap’ project are as follows: 1. The pediatric ophthalmologists at the Department of Ophthalmology, Siriraj Hospital 2. The Eye, Ear, Nose, Throat nurses at Siriraj Hospital 3. The pediatric hematologists/oncologists at the Department of Pediatrics, Siriraj Hospital 4. The interventional radiologist and the radiation oncologist at the Department of Radiology, Siriraj Hospital 5. The ocular pathologist at the Department of Pathology, Siriraj Hospital 6. The ocularist at the Department of Dentistry, Mahidol University 7. The parents of Leber congenital amaurosis patients 8. Mr. Monsak Chaiveeradech at the Department of Advertising, Faculty of journalism and mass communication, Thammasat University 9. The parents of retinoblastoma patients 10. Private and public schools in Bangkok metropolitan area and its vicinity 11. Faculty of Medicine, Siriraj Hospital Mahidol University Numbers 1 to 6 are the retinoblastoma care team at Siriraj Hospital. They are always willing to do what is best for the patients. They all agreed that the ‘Filling the gap’ project would save more lives of retinoblastoma patients so they volunteered to be part of the project. Numbers 7 and 8 offered to support the project without any request. They would like to be part of the project that brings a better quality of life to children. We contacted the parents of retinoblastoma patients and informed them of the project. Most of them were very supportive and agreed to share their experiences with others. As for the schools, we contacted school administrations and invited them to participate in our activity. Without doubt, we received positive responses from every school. Finally, the implementation of the ‘Filling the gap’ project would not have happened without the support of Siriraj Hospital. After all, providing education to the community is one of the missions of our institute.
 6. How was the strategy implemented and what resources were mobilized?
The ‘Filling the gap’ project was created with the intention for others who might be interested to apply the idea without the burden of cost. Those medical personnel working at Siriraj Hospital are volunteers for the project and there would be no need for payment. Regarding the ‘retinoblastoma awareness week’, the key knowledge was to create public awareness of the presenting signs of retinoblastoma and the problems of delayed diagnosis and treatment. Via posters and video presentations, on stage conversations, and television-radio-newspaper media we were able to spread the information throughout the country. Siriraj Hospital provided the space, platform decoration, poster boards, video demonstration, pamphlets, and souvenirs for guest speakers. The key personnel were the retinoblastoma care team at Siriraj Hospital. For ‘knowledge-to-school’ service, the key knowledge was to educate teenagers about retinoblastoma using a short movie and a PowerPoint presentation. We also encouraged them to be a surveillance team for their community and invited them to join our social networking site, which would help distribute the information to the public faster. The key personnel were the retinoblastoma care team at Siriraj Hospital. Siriraj Hospital provided the transportation to and from schools. We received a private funding from the parents of Leber congenital amaurosis patients to produce a short movie clip and a video describing the project. The cost was approximately 300,000 Thai baht or 10,000 US dollars. We also received funding from the Siriraj Foundation to produce T-shirts for our project. There was no new equipment needed to achieve the goals of the initiative.

 7. Who were the stakeholders involved in the design of the initiative and in its implementation?
We must understand that the true success of the ‘Filling the gap’ project would be the decline in mortality rate of retinoblastoma patients. It would take some time to see the impact of this project. As for the short-term success of the project, we are considering the following outputs: 1. Evaluation of knowledge improvement via Pre and Post questions. We are hoping that after watching the short movie and listening to the presentation, students would be familiar with the terms ‘leukocoria’ and ‘strabismus’ and would understand how important these signs are. We gladly found that the short movie, ‘A boy with the diamond eye’, that we played at the beginning of our presentation is very helpful to grab the audience’s attention. 2. The number of people joining our social networking site,รู้ทันมะเร็งจอตาในเด็ก, as well as the incoming questions and comments. The more people enrolling in our site, the faster we would be able to distribute the information on retinoblastoma to the public. People could share their ideas and pictures of suspected children. 3. The number of schools and students participating in the project. Our goal is to visit every school in the Bangkok metropolitan area and its vicinity that shows an interest in our service. We sincerely hope that a lesson will be learned from an hour visit to each school and those teenagers will be able to apply the knowledge appropriately when needed. 4. Those effective television-radio-newspaper media. 5. An attentive continuous working team.

 8. What were the most successful outputs and why was the initiative effective?
We divide the monitoring and evaluation of our success into two phases, i.e. short-term and long-term success. In the short-term, the success has been indirectly reflected in the number of schools and students participating in the project as well as the amount of people joining our social networking site and the comments and questions receiving through it. In the long-term, we will evaluate the duration between the first observation of leukocoria and the first eye exam. Currently, it would take 3 to 4 months up to more than one year before the children with noticeable white pupils have their first eye exam. If the project works, we hope that the children will be examined as soon as their parents notice the white reflex in the pupil. We will also monitor the duration between the diagnosis of retinoblastoma and the first treatment given. It is not uncommon for Thai parents to deny their kids medical or surgical treatment due to religious or cultural beliefs. It could take 6 to 18 months after the diagnosis of retinoblastoma before those parents bring their children back for appropriate care. During our visit to schools, we will not only tell students about the presenting signs of retinoblastoma, but will also explain the treatment detail so they will be prepared and will be able to accept the treatment without delay. We will compare the monitoring data with our retrospective evaluation prior to the initiation of this project. Most important, we will monitor the mortality rate of our retinoblastoma patients.

 9. What were the main obstacles encountered and how were they overcome?
Our retinoblastoma team are working full time at Siriraj Hospital. There were several occasions that we were unable to call for the entire group meeting resulting in lack of communication and the delay in work progression updates. We solved this problem by inviting more personnel to be our volunteers and assigned at least 2 to 3 people to be responsible for each task. This way they can take turns to attend the team meetings and share the updates with their group. While there were some difficulties making the first contact with school administration either by phone calls or letters, all of them were delighted to join the project once we explained the objectives of the project. After the first school visit, we realized that the best way to contact school administrations would be through a personal phone call from one school director to another. Another problem we encountered occurred during the end of the presentation. Students had asked some eye questions not related to retinoblastoma. Although all of our volunteers were registered nurses working in the field of ophthalmology, they were unable to answer some of those questions. To overcome this problem, we set up an instant telephone consultation. The volunteers could call the team leader who is an ophthalmologist and receive the answer right on the spot.

D. Impact and Sustainability

 10. What were the key benefits resulting from this initiative?
During the ‘retinoblastoma awareness week’, we invited television stations, radio stations, and news media to attend the service. They interviewed the parents as well as the doctors participating in the project and broadcast the project throughout the week. We noticed that our message reached out to communities because the department received many phone calls from parents asking questions about their children’s eyes. Regarding the ‘knowledge-to-school’ approach, we were able to prepare those teenagers with knowledge of retinoblastoma and the way to detect its most common presenting signs. We are hoping that the knowledge will eventually turn into an appropriate action once they encounter the real situation. Everyone would agree that early detection is the best way to beat cancer. It will improve treatment outcomes. The ‘Filling the gap project is an example of an attempt to make a difference in the delivery of public services by being proactive. Distributing knowledge to public, especially to those who will become parents in the near future would help them be aware of unusual eye findings when they encounter the situation. It will help them understand the treatment process and make a proper decision without delay. It will take at least a few years before we could appreciate the impact of this project on the mortality rate of retinoblastoma patients in our community.

 11. Did the initiative improve integrity and/or accountability in public service? (If applicable)
The aim of the ‘Filling the gap’ project is to make teenagers aware of the most common presenting signs and appropriate management of retinoblastoma. The project required the production of a short movie that could be used throughout the project. This movie can also be transferred to any hospitals with no cost. As for the maintenance of the project, the hospital will absorb the transportation for school visit as well as the arrangement for ‘retinoblastoma awareness week’. Beside the ‘retinoblastoma awareness week’ and ‘knowledge-to-school’ activity, our social networking site,รู้ทันมะเร็งจอตาในเด็ก, is another approach to make this project sustainable. This site can also be a place for those who want to share their own experiences that might help others in the community. To keep our attentive working team be active in the long term, we have always been focusing on the ideas and suggestions from each member of the team. Every thought counts. Where you aim your thoughts is where your energy goes. We also invited more personnel to join the team and together we will make our dream come true. Every hospital could replicate or adapt the idea of the ‘Filling the gap’ project if they have volunteers with the determination to reach the same goal i.e. to reduce the mortality of retinoblastoma patients.

 12. Were special measures put in place to ensure that the initiative benefits women and girls and improves the situation of the poorest and most vulnerable? (If applicable)
In the short-term, the key elements that made the initiative a success were the good intentions of those volunteers who wanted to make a difference in the delivery of public services as well as support from the hospital and school administration. We chose to start our project with high school students because they will become parents in the near future and we were able to present the knowledge to a large group of people (300 to 600 students) at a time. To enhance the impact of the project, we might aim for more specific group of people such as groups of pregnant women. We could use a similar model containing a movie and a PowerPoint presentation to create the awareness in different target groups. We all agree that “ignorance is the disease, knowledge is the cure” is unquestionable. Unfortunately, it is far too often we pay no attention to this fact in medical practice. Many children’s lives could have been saved only if their parents knew what to look for. The ‘Filling the gap’ project is our determination in taking the first important step towards the community with the hope that it will generate public awareness from one group to the next. If we could turn back in time, we would educate all medical personnel including students to be proactive in their practice. We have been too busy teaching them how to treat patients with sophisticated techniques and overlooked the most important clue to cure the disease i.e. early detection. In the future, we propose that early warning signs of childhood cancer including the white pupillary reflex should be included in high school textbooks. Everyone should have proper knowledge in order to protect themselves and their loved ones.

Contact Information

Institution Name:   Siriraj Hospital Mahidol University
Institution Type:   Academia  
Contact Person:   La-ongsri Atchaneeyasakul
Title:   Professor  
Telephone/ Fax:   6689-3138367/662-4111906
Institution's / Project's Website:  
Address:   Siriraj Hospital, 2 Prannok Road
Postal Code:   10700
City:   Bangkoknoi
State/Province:   Bangkok

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