Inception of Telemedicine after COVID

My name is Carmen Salaverria and I am a psychooncologist working at the only pediatric oncology program in El Salvador. Despite being a low and middle income country, our program has a 60% survival rate. My role in the program is providing psychosocial support to families of children with cancer and working alongside the multidisciplinary team to ensure children with cancer receive a holistic treatment. One of the teams greatest success has been the reduction of treatment abandonment, a severe form of treatment non adherence and which costs the lives of many children with cancer in LMIC.  Our abandonment rate remained at 13% for over a decade until 2011 when a tracking adherence protocol was implemented and reduced treatment abandonment to 3%. The rate has remained steady between 0 and 2% for over 9 years. 

The telemedicine center at the Fundacion Ayudame a Vivir program aims to give access to care to pediatric oncology patients who cannot reach hospital care due to the COVID pandemic and to social and political obstacles which existed before COVID and will not end after the pandemic ceases. The oncology program has also reached it fullest capacity of care, with a growing patient population and an infrastructure and human resource that remains the same. Telemedicine will help allocate resources properly, focusing on patients in follow up care and survivors of cancer and allowing in person care to be focused on patient currently in treatment. The telemedicine center will allow us to reach patients and families who are currently not receiving proper care (patients lost to follow up for example) and to deliver better care to those who need more attention from the interdisciplinary team. Treatment will easier for patients. 

Our program has 5 oncologists and an outpatient clinic that sees over 30,000 patient visits annually.  27% of patients have missed appointments due to a severe lockdown and  COVID, 18% more than the usual percentage of non adherence. Telemedicine has been established as  best practice to secure proper care of these patients. Both patients on and off treatment have benefited from telemedicine in this pandemic. However, our project is to establish TM as an equal means of oncologic care in our center after COVID ceases. We believe patients in follow up care will benefit from this type of attention because travelling to the hospital is becoming more difficult for families due to financial strains, insecurity and violence, and the time invested in travel. Furthermore, survivors of cancer can also be tracked and a proper registry of patients whose lives have been saved by the oncology program can be established. We estimate we have approximately 3000 survivors of cancer, some of whom have not been contacted, and we have 900 patients receiving follow up care who could  be receiving telemedicine instead of travelling to the hospital. Time, infrastructure, and human resource will be focused on patients in treatment. 

Our project is to establish a telemedicine center in the pediatric oncology unit in order to provide this service in a systematic manner and as a permanent measure.  Currently, telemedicine is being done by staff members who have other responsibilities and roles. We believe that with an established center with human resource focused solely on telemedicine, this activity can be launched to a larger scale.  The team will be made up of four staff members; a nurse, a physician, a psychologist, and an assistant. Telemedicine will be asynchronous, meaning that clinical elements, such as test results, will be stored and analyzed at a later time, not in real time.  All patients in follow up care with a year in remission will be moved to Telemedicine Care. Patients in treatment will also be included in telemedicine to reduce their travel to the hospital. Patients in treatment can travel up to 4 times a week to the hospital and some of these visits can be done through telemedicine. Team based education on telemedicine delivery service must be included for the team as well as education for parents and patients to promote engagement and responsibility. 

El Salvador diagnoses approximately 200 new cases of childhood cancer every year and  has a 60% survival rate.  Currently we have approximately 400 patients in active treatment, 80% of them are 11 years old or younger,  and  about 900 patients in follow up care. Approximately 47% of patients come from rural areas. Also, 47% of families also have some kind of social risk, meaning they live in gang dominated territories,  have family members who are gang members, or are gang members themselves. 20% do not have access to drinking water, 44% do not have access to restroom/ toilets inside their homes, and 12% do not have electricity. Most families live from informal jobs; 47% of families have an income of less than $150 per month, 21% have incomes of $150-250, 17% with incomes from 250-500, and 15 % have incomes higher than $500 a month. 53% patients travel more than 2 hours to get to the hospital. Despite all these social and financial difficulties faced by patients, abandonment of treatment is low. Telemedicine aims to assure patients receive care but allowing them to stay more time at home by reducing outpatients visits to the hospital. 

Pediatric cancer patients are a minority. 80% of cases of childhood cancer are diagnosed in LMIC while 20% are diagnosed in developed in countries.  Only 20% of patients in LMIC will hace access to care.   Fundación Ayudame a Vivir funds most of the oncologic treatment in El Salvador through fundraising and donations, but the program strives to offer more than just oncologic treatment; we focus on the emotional, social, and spiritual wellbeing of patients and their families. Obtaining funding for medicine is difficult in a country where poverty, violence, and social issues affect the lives of most people. 

Implementing a proper service of telemedicine has been in our minds since 2016 due to increasing patient population and limited resources of the program. At that time, many patients were not open to the idea of telemedicine and there was a slow acceptance of the service. Reasons behind this were that patients preferred coming to the hospital,  felt safer if the doctor physically examined the child, desired to see staff and patient friends, and were distressed about detaching from the oncology unit. COVID forced many to rely on telemedicine in order to continue oncologic care. There have been setbacks as well as advantages, but we believe telemedicine will grow steadily and become accepted as normal after COVID and that patients are now confortable with the idea of using this service.  We strive to have a telemedicine service that functions as efficiently as conventional care . The team in charge of telemedicine  has done a marvelous job during this time of pandemic,  but they have also abandoned their usual roles and must return to those responsibilities. A new team must emerge from this crisis and set in motion a new era of pediatric oncology attention in El Salvador. 

I relate to both my pediatric oncology patients and my fellow staff members. I see patients struggling to attend their appointments every day and their lives disrupted by the constant travel to the hospital. Cancer implies a long road of treatment, and in LMIC seeing families not miss their appointments is admirable. Families travel up to 10 hours to reach the hospital, abandon their other children for days or weeks to stay at the hospital with the patient, they come into a world of medicine and become their child´s nurse through education, even illiterate parents. In times of COVID, with no public transportation available and a severe lockdown, parents did not miss appointments. They attended appointments even if they had to walk. Facilitating appointments for these patients through a proper telemedicine service would improve quality of care and increase patient satisfaction.  

On the other hand, staff members are devoted to the program and patients, but are overworked. As more patients become survivors of cancer, the  patient population grows and the staff remains the same. Telemedicine would also mitigate some of the burden of work, improve personnel satisfaction, and decrease health care costs. 

We have experience developing and implementing projects. We are a team who works close together and respect each other professionally.  In 2011, we launched a project to understand, measure, and decrease non adherence to treatment. The tracking protocol allowed the team to detect absences to treatment, determine reasons of absences, and begin interventions in real time . Some of these patients wanted to abandon treatment, but this protocol and interventions allowed the team to intervene quickly and bring patients back before abandoning treatment. These work was done by a three person team and for 9 years we have rescued many patients who would have otherwise abandoned treatment. Psychological, social, and financial aid was given to these families in order to allow them to continue treatment. Abandonment of treatment had remained between 13-20% for almost 15 years. In the first year of implementing the protocol, abandonment rate dropped to 3 %. We have maintained the rate for 9 years, including closing 2017 with 0% abandonment rate, a milestone for LMIC. 

As in any project, many of the lessons are learned along the way and changes must be made periodically. Evaluations must be made especially at the beginning to ensure that delivery of care is being given properly and that all patients are being reached. Working in previous projects, many changes and modifications were made along the way so as to run a more efficient program, as was the case with the adherence protocol. We discovered that smaller teams seem to work more efficiently in this type of projects because communication is easier with fewer people and the tasks and responsibilities of each are more easily defined.  We also learned there must be a leader within the team who leads and oversees the project. 

We are aware that this project demands  great attention to detail in order not to lose any patients. The most important issue in providing telemedicine is ensuring that quality of care is not neglected.  In cancer follow up care, the main objective is detecting relapses. We must ensure that this will be possible even if not seeing the patient in person. The team must be trained in precise interviewing and evaluating patients by telephone. 

I am in charge of the psychosocial team in the pediatric oncology center in El Salvador. The care provided is child and family centered, and my primary role working with patients and families in their emotional adaptation to cancer. However, the need for care must be based on team work between all disciplines in the hospital setting . The psychosocial team is made up of psychologists, social work, and nurses who strive to provide care based on evidence and we work alongside physicians and oncologists. As head of the psychosocial team, I work together with leaders of the other disciplines. 

Moreover, I implemented and led the adherence protocol. I am still head of the project and the team works under my supervision. 

Although telemedicine is not a new practice, the use of telemedicine in Low and Middle Income Countries (LMIC) is less frequent and succesful than in developing countries. Telemedicine is highly necessary in LMIC because of lack of access to treatment, scarcity of specialized doctors, and the social difficulties for patients to reach available care. Developing counties also have the technology to implement such practices and this is not always available in LMIC as is the human resource available to implement telemedicine. The El Salvador oncology program has pioneered many projects in the Central American region because the team is effective and driven. We like to innovate and bring new ideas to reality even if it implies more work for some people. We are certain we make telemedicine an equal counterpart of conventional medicine in our center and lead the way for other pediatric oncology centers in Central and Latin America, as we did with the reduction of abandonment of treatment protocol.

Our need is that pediatric oncology patients need telemedicine to facilitate delivery of multidisciplinary care in a country with financial, social, and political difficulties. Our desired state is to offer telemedicine alongside conventional in person care to patients ensuring the same quality of care. In order to do this, we need money, human resource, and technological equipment. Our activities would involve education to patients and caregivers about telemedicine (route of attention, responsibilities) and for health care personnel in charge of telemedicine, update patients contact database in order to establish contact, create a protocol of delivery of care for both patients and staff, and establish the roles and responsibilities of the team. The outputs are reaching at least 70% of patients in follow up care,  80% of survivors, and 40% of patients in treatment through telemedicine, reducing time invested by physicians and other specialists in in person appointments m and reducing number of in patient appointments. We expect some of the outcomes to be the reduction in travel expenses by patients, reduction of time spent at the hospital, reduction of costs for the medical center, and an increase in satisfaction of care for both health care personnel and patients. 

Telemedicine in El Salvador was serving around 120 patients per year since 2017, mostly patients who are survivors of cancer. Currently, due to COVID, we are attending approximately 200 patients per month since March. We expect telemedicine to become a permanent part of our program and to be serving between 200-250 patients through telemedicine during this year. We anticipate this number will grow in the coming years, as more patients are located (survivors) and more patients rely more on the use of technology for home health follow up.  Some factors that will impact the decision to continue with telemedicine are the distance to the hospital (patients can travel up to 10 hours), financial cost of travelling to the hospital (some patients pay $100 to get to the hospital, with an income of $300 per month), the teams capacity to offer a satisfactory service, and the time saved for families who rely on telemedicine.  We estimate we can reach 400 per month through telemedicine in the coming years. 

Our goal is two fold, to facilitate oncologic care for pediatric patients and their families and  freeing physicians and the team through the use technology to focus on patients in treatment. We believe there will be an improved satisfaction in both parties and that this approach will create a lasting impact. Although most centers are using telemedicine, creating a permanent and orderly center in a low and middle income country will serve as an example for other countries to do the same and shift oncology attention to technology. 

Our biggest barrier currently is the lack of human resource and the finances to obtain these. Also, culturally it has been difficult to sell these product because patients are emotionally attached to a center and personnel who has cared for them for so many years. Parents are afraid to stop attending in person appointments. COVID has given us the opportunity for parents and patients to understand how telemedicine works , to feel secure with this type of attention, and are less afraid to detach from the hospital health care team. Although education for parents will be necessary, we believe it will be easier to promote after the COVID pandemic.

Our program brings treatment free of charge to all children with cancer in the country, regardless of their socioeconomic status. We offer oncologic treatment, psychosocial support, education, spiritual support, among others to ensure a holistic approach to cancer. Without this program, children with cancer would not have a chance to survive.  Approximately 60% of children are cured from cancer in the country, as opposed to a 5 % survival rate 20 years ago. 

We rely on donations and fundraising to provide a multidisciplinary treatment. 

All our projects are sustained through donations, fundraising activities, and grants.

We need funding to install an appropiate telemedicine center, which involves hiring people and the technology to implement it. Currently, especially after COVID, our foundation faces financial challenges and such a program can not be financially covered by our foundation. We rely on grants to implement projects which can increase the quality of our program.