FAVApp

Pediatric cancer patients in low and middle-income countries face restrictions to receive proper healthcare, such as long distances to the hospital, financial difficulties, violence, and a precarious public health care system.  Fundacion Ayudame a Vivir (FAV), the only pediatric cancer program in the country, has been successful in delivering comprehensive treatment and quality care to children with cancer.  The team intends now to unlock the potential of technology to deliver faster, real-time patient monitoring and interventions through the provision of cancer expertise to community front-line healthcare workers.  Caregivers will have access to cancer education and the patients´ personal clinical information. The oncology specialists will be able to access patient information, self-report measures for better symptom management,  provide telemedicine to caregivers, and communicate with other healthcare providers to promptly manage emergencies in the patient's community, thus reducing patient mortality and decreasing patients' unnecessary travel to the patient's hospital.

El Salvador is a low and middle-income country where only 20% of the population has health insurance. The remaining 80% are covered by the Ministry of Health. The demand for health coverage is high, given that approximately 44% of the nation is aged 0-19 years old. The National Childhood Cancer program, funded by a non-governmental organization, was established in 1993 and receives 200 new patients yearly.  Survival rates have increased from 5% in 1994 to 70% in 2020 and treatment is free of charge for patients.  El Salvador´s pediatric cancer program is a level 2 cancer center, within a tertiary pediatric hospital.  Aside from medical and treatment appointments, cancer patients also travel to the hospital when treatment complications arise.  Violence,  poverty, and long distances hinder seeking prompt attention for many patients. Most patients consult at primary and secondary healthcare centers near their homes for treatment-related complications and are then transferred to the tertiary care hospital. However, primary and secondary care centers lack the knowledge and expertise to treat the complexities of pediatric cancer patients, resulting in delayed care in potentially life-threatening conditions. Approximately 10% of patients in treatment die from treatment-related complications, which can be decreased through proper leadership and supervision. 

 FAVApp is meant to be a continuance of the person-to-person education and serve as a bridge between oncologists and caregivers as well as oncologists and community healthcare providers when they are outside the hospital. By creating this application we would create a portal of information to educate and empower patients, patients and oncology personnel will be able to communicate with each other,  and identify potential allies in the public healthcare system to create a mechanism of provider-to-provider communication. Considering most patients live in rural and often remote areas, the app will serve as a portal to communicate and help patients seek aid promptly when complications arise at home. Moreover, the FAVApp will facilitate adequate treatment in primary and secondary care centers by offering direction to healthcare providers through treatment guidelines for the management of complications by chemotherapy. The app would serve as a clinical guide to treating potentially life-threatening complications in patients with cancer, such as fever, diarrhea, and vomiting. Clinical guidelines for treating these complications will be uploaded to the app. By being treated in their community hospitals, we could minimize unnecessary visits to the hospital and reduce patient mortality by treating rapidly pediatric oncology emergencies. 

El Salvador is the smallest country in Central America, bordered by the North Pacific Ocean and located between Guatemala and Honduras; it has a land area of 20,721 km2 and 320 km2 in water. The Gross Domestic Product (GDP) growth in El Salvador reached 1.862 percent in 2019, but the country has registered persistently low economic growth levels due to violence and poverty. According to the International Monetary Fund, GDP per Capita is equal to $ 9,139.70 per year. The publication entitled "Projections and Estimates of the Population of El Salvador (1950-2050)", produced by the Ministry of Economic and General Office of Statistics and Censuses, reports the projection of El Salvador's total population for the year 2020 of               6,765,935 inhabitants. The pediatric population (0-18 years) constitutes 35%, comprising 2,387,091 inhabitants.

El Salvador´s National Childhood Cancer Program, supported by Ayúdame a Vivir Foundation in alliance with Children National Hospital Benjamin Bloom and St. Jude Children's Research Hospital, was established in 1993.  Since its beginnings, the program seeks access to comprehensive treatment for Salvadoran children with cancer, improving their quality of life and their family in all stages of the disease. The program has national coverage of pediatric cancer and receives 200 new childhood cancer cases annually and treats 350 patients per year in an age range of 0-<18 years. Treatment is free of charge for patients, but the disease incurs a lot of out-of-pocket expenses, like travel allowance. Leukemia (48%) is the most frequent pediatric cancer in our community, followed by Lymphomas (13%) and Central Nervous System Tumors (12%). The treatment for patients can last a minimum of nine months to a maximum of two years and a half.  According to socioeconomic interviews, 51% of our pediatric cancer population lives in extreme poverty and 49% of our patients live within a sustainable economy.  75% of children with cancer in El Salvador have to travel between 2-12 hours to reach the hospital, and only 25 % of the patients live in the surrounding cities near the hospital. 

Progress in childhood cancer treatment has resulted in survival rates of over 80% in High-income Countries (HIC). The reality is different in low and middle-income countries, where approximately 80% of children with cancer are diagnosed but only 20% are cured. In El Salvador, cure rates are 65%.  Abandonment of treatment rates in low and middle-income countries is high due to poverty, lack of access to treatment, and socioeconomic factors.  El Salvador has an abandonment of treatment rate of less than 1%, primarily fostered by education to the caregiver and a tracking protocol that allows healthcare personnel to detect absences in real-time. 

The team intends to focus now on maximizing the benefits of technology and making alliances with primary and secondary attention healthcare providers. We have wanted to create our own app for caregivers and patients for many years, primarily to provide more education on cancer treatments and the management of side effects and complications. With a cancer diagnosis, comes a lot of information and responsibilities for caregivers to manage. From appointments, medicines, side effects, and the hospital routine, caregivers need guidance with information. The national pediatric cancer program educates caregivers from the point of diagnosis on specialized topics to provide ongoing care for these children. Education includes diagnosis and treatment, teaching specialized skills for at-home care, and assessing potential life-threatening complications that require immediate medical intervention. We are aware that many patients and caregivers forget or do not understand much of the information that is initially explained. The app will allow caregivers to access information at moments when information can be better assimilated and comprehended.

We believe we can scale up the benefits of the mobile application by reaching out to primary and secondary healthcare providers. El Salvador is a country where the penetration of mobile phone networks is higher than other necessities, such as electricity.  Currently, we are aware that many patients are not adequately treated in their community hospitals or clinics. Approximately 10% of pediatric cancer patients die of treatment complications. At the hospital, treatment-related mortality has decreased with the implementation of the Early Warning Assessment Tool (EVAT). EVAT aims to improve the detection of deterioration in hospitalized patients in order to decrease mortality. With EVAT, patient mortality has decreased in inpatient care patients. While the patient is at home, complications may arise and education can assist in preparing caregivers to take action when this happens. Treatment delays lead to health complications, including death. These delays are fostered by public hospitals' healthcare workers' lack of knowledge on how to treat pediatric cancer patients, the burden of work, and the lack of resources to properly treat cancer complications. By providing guidance and counsel to healthcare workers, patients can be treated promptly and adequately. 

This proposal comes at an important moment since the National Plan for Cancer has been written and is being socialized among healthcare workers. By giving access to the mobile application, pediatricians in primary and secondary level hospitals can make referrals, consultations, and treat patients in emergencies. 

Creating an app will enable communication between patients, specialized oncology healthcare personnel, and primary and secondary healthcare personnel. At present, children with treatment complications either go to a hospital near their home or travel to the pediatric tertiary hospital in the nation´s capital. Travel may be long for many, maximizing the risk of complication or death. Caregivers express a lack of prompt or adequate management at these community hospitals. We believe through the application we can foster confidence in the healthcare personnel by providing treatment guidance and counsel. Patients would be treated rapidly before being transferred to the tertiary center. 

SAM (Sistema de Apoyo Medico) is our pediatric cancer program hospital medical support system software, developed in 2011 to provide safety and quality in chemotherapy administration, starting with the ordering of chemotherapy, continuing with order verification and preparation in the pharmacy; and concluding with nurse administration. SAM has expanded through the years, allowing the clinical team anything from safety in chemotherapy preparation, patient identification, detection of absences, modules for each discipline in the oncology team, among others. The FAVApp is an incorporation of the existing system and will operate within SAM´s structure and access its patient and medical information.

Cancer patient mobile applications have existed for a long time in an effort to aid patients with information and hospital routine guidance. These applications have been created in many hospitals and treatment centers, customized to fit their patients' needs. The situation in low and middle-income demands that we create an app with tools that facilitate treatment complication management for a population with limited resources. Treatment complications are predictable and cancer patients are educated and trained to respond to these emergencies. Difficulties imposed by financial constraints, security and violence, and a precarious public health system may lead to increased patient mortality. Our innovation is providing a bridge of communication between the oncology team and the primary and secondary care centers around the country in which our patients consult emergencies by incorporating this proposal into a national plan.  With the current developments in the National Plan for Cancer, pediatric cancer will be further incorporated into a national policy and supports the WHO Global Initiative for Childhood Cancer, which aims to achieve at least 60% survival rates in LMIC The pediatric cancer application will improve quality and access to care regardless of where the patient is. Healthcare providers will be able to evaluate, diagnose, and treat complications with the counsel of the oncology experts. Through the application, they will also receive distance education, reinforcing the diagnosis and referral of new patients and improving the treatment of complications of patients in front-line treatment. 

The server will have the capacity to host 10 million records and be able to have a stable and secure connection in order to be able to attend to requests from approximately 500 users.  These users could be patients in treatment, specialists, nurses,  social workers,  and psychologists and allow to register doctors of the national health system that provide some type of care in the community to cancer patients in the program. Hence, the importance of a permanent power supply, connection to the existing power plant, and keeping the backup copies updated. 

A new module that links to the existing Medical Support System (SAM) will be created. This database will allow the consultation and registration of new data through a mobile interface that can be used from anywhere in the world. This will allow having integrated and timely information directly from the people who provide patient care, as well as to keep updated patients' symptoms using a questionnaire uploaded to our server which will be used for consultation. The operating system will be Windows server 2016 and the Mysql database.

Currently, the server does not have an adequate installation which puts the information at risk,  since it is inside the electrical panel room. Therefore it is necessary to consider a space built with safety standards and A-rated materials. This involves rewiring the 23 terminals and moving the Internet fiber optics and the existing link with another friendly institution.

ONCOPEDS, a mobile app developed in Peru to have inter-consultations between primary care providers and oncology specialists to facilitate early diagnosis of cancer,  is an example that mobile apps can greatly impact the care of children with cancer. The app was developed to facilitate early diagnosis but became a useful tool during the COVID pandemic. Through ONCOPEDS, providers and specialists have been able to manage patient care. The application also serves as an educational tool for patients and caregivers.   The app has the support of the Ministry of Health. 

https://www.paho.org/en/storie...

Another example of a successful mobile application is the Med Safety App developed in Ghana as a portal of communication between patients and healthcare providers. Although not cancer-related, the app allows consumers to report side effects from products. The successful management of symptoms and reporting allows for faster and more effective communication.  https://www.gh.undp.org/conten...

CancerNet Mobile is a cancer application for disease management, allowing patients to report symptoms, log medications, enter appointments, among others. This type of app may alter health-related behaviors, such as increasing adherence to treatment and appointments and allow for better symptom management.

https://www.cancer.net/navigat...

Some potential risks are the following:

1. Power failure: Power failures are common in El Salvador and by buying a power supply system we can avoid the system from crashing. 

2. Compatible platform: For this purpose, a mobile interface is developed in php so that it can be navigated from any device regardless of its operating system or version (old or new).

3. Privacy: The information contained in the hosting database for each patient does not exceed 21 days. After 21 days, information will be deleted, as will information of patients who are deceased. Also, we would create encrypted passwords.

4. Loss of information: To avoid this, we would acquire and configure software and technological backup devices. 

5.Difficulty using the application: Education will be provided for healthcare personnel and patients/caregivers on how to use the application. 

Currently, the solution is not being implemented. There are no patients being served with the solution. 

Once created, this solution will start serving patients with leukemia, the most common type of cancer. There are approximately 200 patients with a leukemia diagnosis in treatment per year in El Salvador. We choose to launch the application with this population because most pediatric cancer patients have leukemia, treatments are long and arduous, and death from complications is high in this group. In the leukemia patient population, 4.4% of patients with leukemia die from complications during the induction phase at the hospital and 4.8% die in remission from complications at home. We believe with the application, the percentage of patients who die of complications at home could decrease.  Gradually, the other types of cancer will be incorporated into provider-to-provider telehealth. 

In 5 years, this app could be used by other public hospitals with patients with cancer, especially if there is support from the Ministry of Health. Patients, especially those in palliative care,  can be treated and managed at home to decrease flow of patients in hospitals. 

Our goal for the next year is to socialize the application with the patient population, the oncology personnel, and public healthcare providers who work in primary and secondary pediatric care centers.  With the use of this application, we hope to reduce patient infection-related mortality and familiarize and educate primary and secondary healthcare personnel about childhood cancer. Many pediatric cancer cases are referred late from primary care centers mainly because healthcare personnel are unable to detect symptoms early. Although the primary goal of the application is that patients in treatment are managed promptly by primary care centers to avoid mortality, we believe a collateral effect will be education that will in turn result in early referrals of future new cases of cancer.

In five years, we would like this application to be used by other healthcare users. For example, other chronic diseases of childhood could benefit from its use as would adults with cancer. One key factor for this to happen is involving the Ministry of Health as stakeholders.  

Once the mobile app is launched, there are several indicators we wish to measure. Among them are the following:

1. Evaluate the ease and effectiveness of the application. We must evaluate whether patients and health care providers find the application easy to use and its simplicity in data entry and the interpretation of this data. 

2. Evaluate the safety and privacy of the patient data entered into the mobile app. 

3. Evaluate the effectiveness of communication between patients and providers and the interventions of telemedicine. 

4. Evaluate the efficiency and effectiveness of provider-to-provider telemedicine by measuring mortality rates.  Mortality should decrease with the patient´s being managed at primary and secondary level hospitals with the specialist´s guidance. 

5. Evaluate the impact of provider-to-provider communication and measure the level of knowledge acquired by primary and secondary healthcare personnel regarding childhood cancer. Early referrals of new cases should increase.  

6. Measure the health literacy of patients and caregivers. Through the application, caregivers should be better educated on the topic of cancer and its treatments. This should result in better adherence to treatment and better care of the patient in emergencies.  

We have 6 people on the team. Two are full-time oncologists at the pediatric cancer center, a full-time psychologist, a full-time nurse educator, a full-time software engineer,  and a member of the Board of Directors. In the implementation phase, all members of the clinical area are involved. 

The team has been very involved in searching for solutions during the pandemic to deliver the best quality care to pediatric cancer patients. Telemedicine was successfully launched by the team in early March 2020 and it has now replaced 40% of face-to-face interactions. The team is composed of a multidisciplinary group that respects each other professionally and is open to each person´s contributions. The particulars behind each idea are constructed by the oncologists, psychologist, member of the board of directors, and a nurse educator. Each person brings in a different view of the problem with the necessities each may face from their own line of work. The member of the board of directors is also an active volunteer who contributes to the palliative care program and has experience and contact with patient´s needs. The execution of the software creation is the responsibility of the IT software engineer with the aid of the nurse educator, who has been extensively involved in the creation, modification, and execution of the software program.  Many successful additions of the software have been done this way, with each person contributing with ideas and counsel. The idea of the application for patients and providers has been in the mind of the team for a couple of years, although its development has not begun. The pandemic made us believe it was even more important to have such a program to communicate better with our patients and be able to resolve patient´s emergencies from a distance. 

The project team has worked together for many years and on many projects, sharing common goals, expectations, and a passion for the pediatric oncology program. We have respect and appreciation for the contributions each team member delivers and with this respect for each other comes a fair distribution of power, recognition, and risks. We share the same values and goals: union and passion, respect and compassion, and honesty. We belong to the same team and we work together to achieve our mission to help all children with cancer in El Salvador live. Each one of us is a key piece to achieve our goal and we are united by our passion for the cause. We believe we are equal. That is why we treat all of our patients, staff, volunteers, visitors, donors, and stakeholders with respect, kindness, and compassion. We are committed to the responsible and ethical management of our resources. 

No, none of the members of the team have a rare disease. 

Childhood cancer is a rare disease and has become one of the leading causes of death in children. There is a global inequity in its treatment.  20% of childhood cancer cases are diagnosed in high-income countries, while 80%  come from low and middle-income countries where access to treatment is challenging due to financial difficulties, distance to treatment centers, countries lacking the capacity to provide quality care, unavailability of medicines, among others. El Salvador is a low-middle income country with success in its program. The oncology team, from the doorman to the oncologist, is devoted to the project.  We have implemented projects that benefit our patient population, with little resources. We believe we can always do something more to better our service and attention to the pediatric cancer population. With a mobile application such as this one, we could reach out to primary healthcare providers who inevitably have contact with our patients and we can guide and teach them to manage this special population with all its demands. 

With the COVID pandemic, FAV has experienced a financial crisis. All its profits are oriented towards chemotherapy and salaries. There is little capital to invest in projects such as the development of a mobile application and its sustainability. We understand this tool should be part of a comprehensive healthcare policy and not just an internal project.  We could benefit from orientation in the development of a business plan and in pursuing potential investors. 

Also, we believe this project could have an enormous impact on other cancer populations or other diseases. It could be expanded on a national level allowing specialists to provide guidance and direction in the management of rare diseases across the country. Stakeholders such as the Ministry of Health should be included in this proposal to have a bigger impact. 

The team has a devoted and professional IT team that can develop the app to fit our population's needs thus no guidance would be required in this area. 

We would be interested in partnering with anyone with experience in providing direction to develop this proposal efficiently and effectively. We do not know of any particular organization or Solve Members who could aid in this process, but we would enthusiastic to work with anyone who could guide us.