Abstract
The purpose of this paper is to render an account of the experience of a group of healthcare providers and to propose innovative solutions for patients with Spina Bifida (SB) in Argentina.
Based on our practice, patients reach specialists too late (40% already undergoing chronic kidney disease stage 1). However, several strategies were implemented in order to reverse this trend, among which were: the setting up of a professional network (via emails and Google groups), team training at different locations, videoconferences, and calling the Ministry of Health to action. Additionally, we developed a project through telemedicine to inform patients and empower caregivers throughout Argentina.
Introduction
Argentina is a large country which is 2,700 miles long. Of its 43 million inhabitants, 13 million live in the Buenos Aires province and its suburbs. One third of the population lives below the national poverty line. Though Argentina has a Federal Government, there are considerable differences in terms of resources among the different provinces. Additionally, the healthcare system is comprised of both public and private sectors.
Since 2003 public policies regarding spina bifida (SB) include the fortification of wheat flour with folic acid, timely closure of the neural tube defect in all patients, and the provision of proper neonatal care. Concurrently, voluntary termination of pregnancy is illegal.
As is widely known, the current gold standard of care for individuals living with SB is a multidisciplinary team model. Since SB is an uncommon condition, it does not attract the attention of public health policy makers, and the few health centers with SB clinics are located in Buenos Aires and in four other cities of Argentina. However, since SB clinics are not a priority to the institutions where they are found, often they are closed down, forcing patients to return to basic clinical care.
Estimates
There are no accurate data on the number of pediatric patients with SB who
actually reside in Argentina. However, considering the fact that there are 750,000 births a
year, there are an estimated 5,300 cases. According to the latest survey carried out in 2016
by the National Network on Congenital Anomalies of Argentina (NNCAA, English for RENAC), the
prevalence was 5.19 (4.45–6.02)
Analysis
In 2010, after over 900 patients visits from different regions of country, the SB Team of the Hospital Garrahan discovered that a great number of patients received multidisciplinary specialized care for the first time. These patients had not received the basic standard treatment for SB care. Moreover, between 2011 and 2012, the mean age of new patients (except for those directly referred to neonatology intensive care due to a defect in the neural tube closure) was 6.28 years. Only 9% of this group of patients had undergone complete urology work-up (i.e, serum creatinine levels, renal scintigraphy, renal and bladder ultrasound, and video urodynamics, or the combination of voiding urethrocystography and urodynamics). Only 30% of this cohort was on clean intermittent catheterization and 21% were on oxybutynin treatment. Unfortunately, 40% of the patients’ condition had already advanced into chronic kidney disease, stage 1 or higher. With this evidence, it became clear that treating patients in a tertiary-care center did not mitigate the adverse effects on the quality of life for these patients.
First approaches
The foregoing findings have led to extensive discussion on how to solve the latter issue and the conclusion was that the main issue to address should be the lack of specific knowledge by healthcare professionals outside tertiary-care institutions regarding the needs of patients with SB.
On rare occasions, specialists travel to the interior of the country in order to visit groups of patients. Yet, there is no systematic coordination between these specialists and local physicians. In some cases, a specialist is available in a nearby town, but local healthcare professionals do not contemplate a referral, since they are not aware that the possibility for such actually exists. Therefore, a first approach towards solving the problem was thought to be to get in touch with professionals already working on SB around the country and creating a network to inter-connect them all. Patients would, as a result, get timely and closer attention, and they could potentially reach specialized centers in better health.
Once the first contacts were made by mail, available strategies were discussed by the team. Two options were considered: the usage of a previously existing platform or the launching of a new one.
Using an already existing platform
Argentine Society of Pediatrics (AS of P, English for SA de P).
National Ministry of Health.
Local SB Association.
Launching a new platform
Leading to the creation of an independent medical association to gather professionals with expertise in SB.
The advantage to this approach was the greater freedom to act independently; of course, the greatest disadvantage was the need to start from ground zero.
Meanwhile, in July 2011, the Google Group “MMC Argentina” was created to connect professionals, who were now able to exchange both knowledge and concerns regarding these issues. However, the most valuable contribution the new platform offered was that professionals could learn who was working where.
A public data base was set up which included professionals’ names, specializations, and affiliations. The resulting group included 204 members, with active participation by 68 (33%) of them. Since its inception, three years ago, 59 issues have been lively discussed. The most popular feeds were videoconference abstracts. By the time the tool was taken off-line, there were still 136 pending invitations.
During that same year, the interdisciplinary team at the Hospital Garrahan was officially recognized by the Institution, which has led to greater access to resources. Additionally, goals were set which consisted of six components, namely:
Component 1
Patients with SB who attended the Hospital Garrahan would have access to the scope of the interdisciplinary program.
Inclusion in the integrated 1-day care (Day Care) model.
Incorporation of a fellow professional.
Component 2
Efficiency in planning follow-up visits and examinations.
Implementation of an “SB Week” to coordinate care protocols and studies for patients more than 120 miles away.
Component 3
Adequate referral of patients to local healthcare institutions.
Drafting of specified referral form.
Creation of email for counter-referrals.
Consultations through the Office of Communication Outreach (English for Oficina de Comunicación a Distancia) of Garrahan Hospital.
Nonetheless, the demand for consultations through these channels was scarce.
Component 4
Family Training.
In 2011, four provinces were visited by the team. A booklet containing information for parents was delivered to families at the clinics, and made available to parents as they were discharged from neonatology.
Annual workshops were held for both patients and families (Physical Activity and Disability, Healthy Eating, Management of Neurogenic Bowel, among other topics) and this is the sixth uninterrupted year they are provided.
Component 5
Health Teams Training.
In 2011 the first “Guidelines for urological management of patients with SB”, were published and printed (currently available on line).
Three videoconferences were held with the participation of centers in 16 (66%) provinces (Argentina has 24 provinces in total).
The team travelled to seven provinces to provide training for healthcare teams.
In 2012, the team decided to actively participate in every event where specialists were required.
The First National SB Meeting was organized and held in the province of Chaco, with participation from eight provinces.
The team had Speaker participation in the Annual Workshop for RENAC-Ar.
The team had Speaker participation in the First Latex Allergy Meetings.
The chapter on SB in the Online learning course of Internal Medicine, SA of P, was published.
The team had speaker participation in the Second Congress of Pediatric Disability. SA of P.
The team delivered a presentation in a round table at the Argentine Congress of Physical Therapy and Rehabilitation.
Component 6
Adult patients referred in due time and manner.
No progress has been evident concerning this component.
National Ministry of Health (NHM) stage
Once the Google group had begun connecting specialists nationwide, and more data on what was really happening with patients with SB became available, the project began to slip from the SB team’s grasp at Hospital Garrahan. Fortunately, by working at a National Hospital, access to governmental entities is facilitated.
In mid 2012, the first meeting with the Department of Maternity and Childhood of the National Ministry of Health took place. As expected, no official data on the current situation of patients with SB in Argentina was available, except for estimates provided by the team. Estimates on the cost of care and an analysis of the situation were presented.
Response from the Ministry was fast and an Advisory Board was established consisting of representatives from the main hospitals in the city of Buenos Aires and its suburbs (Hospital Garrahan, Hospital Gutierrez, Hospital Casa Cuna, Hospital Posadas, Hospital Ludovica, Hospital Italiano, and Hospital Austral). That same year, the Advisory Board started working on the first Neonatal Care Guidelines, which were published in May 2013, and the first meeting of specialized teams organized by the NMH was held.
The above-mentioned guidelines were distributed by the RENAC among most of maternity wards in the country. By the time the neonatologist reported a newborn with correctly identified and coded SB, the specialist, who had had timely access to the guidelines, could suggest the clinical approach and outline the action plan.
Since then until early 2015, meetings continued to be held with the aim of developing follow-up guidelines. Yet, due to political changes in the national government, support for the project was interrupted and, as a consequence, the material has not been published to date.
New approach – empowering the patient
After several unsuccessful attempts to make the Ministry of Health reconsider the project, Dr. Valverde (from the Austral University Hospital), together with the SB team of Hospital Garrahan, decided to work independently on a new approach. However, after six years with limited progress there were still scarce resources available. Thus, it was difficult to engage local healthcare professionals with SB patients. Patients and families were dependent on specialist teams at tertiary-care centers. With this in mind, and in the context of new IT tools widely available (such as smartphones and telemedicine regarding care of chronic conditions), the focus changed towards patients and families.
Empowering patients and caregivers was regarded as the best solution, and therefore, in November 2016, a project called “Despejando Caminos” (Spanish for Clearing Paths) was launched with the support of local developers (MobileHealthApps S.R.L.). Different profiles, as well as the role each actor would play were determined (i.e., patient/caregivers (P/C), local health professional, and specialized team). A Minimal Viable Product (MVP) was developed with a focus on empowering patients and caregivers, whereby the specialized team and the attending physician would only participate in specific processes.
MVP: “The Patient Digital Notebook”
Step 1 – The Patient
The P/C would:
Upload the Clinical Chart using predesigned forms with all existing data before birth
and after (Diagnosis/Shunt/Surgeries/Ambulation/Intercurrences).
Upload all past studies in templates to be filled out with data that would be useful in follow-up procedures (weight, creatinine levels or data on urodynamics -- all easily shown in graphs).
Upload new studies (by means of the same templates).
Step 2 – Interaction Patient – Specialized Team
At the end of each evaluation by the specialized team, the patient/caregiver, completes the forms with the instructions of each specialist in a simple and tabulated manner. A checklist is generated for Pre-Consultation where subsequent steps are established. Finally, the care coordinator, together with the patient/caregiver defines an objective to focus on until the next appointment.
Step 3 – Patient – specialist team – local physician
Pre-Consultation: One month prior to the follow-up visit, the patient/caregiver is notified through the App, and the check-list is repeated for accomplished objectives. The patient/caregiver has the responsibility of updating the information, by stating intercurrences during the period between consultations.
The specialized team should check pre-consultation reports on a weekly basis. Should it be incomplete, it must contact the family to assess the status of the patient and subsequently either confirm or reschedule the date for the consultation.
Finally, the patient’s local physician will be able to use the pre-designed templates that will be completed by the patient, with the patient’s medical chart and all significant updates to request additional therapies, medication, transfers, or whatever else is needed.
Target Population:
Patients less than two years old (under care of the mother). Teens (towards
transition).
Conclusion
In most cases of patients with SB, evaluation of the neurogenic bladder and commencement of treatment are delayed, thereby leading to an increased risk of long-term sequelae and decreased quality of life. These findings suggest a clear need for an interdisciplinary approach at tertiary-care centers. The implementation of higher quality of care requires technological and human resources to be managed efficiently. But these needs can only be met if the different levels of healthcare work jointly. The families’ participation is key, since they could require continuous formation and training of each health team.
A group of health-care professionals attempted to solve the problem addressed above, but failed due to lack of governmental support. Thus, the role of the Ministry of Health regarding care of patients with SB is also essential.
In this new approach, we urge the RENAC and the National Ministry of Health to participate in combination with non-governmental associations.
Footnotes
Acknowledgments
Office of Outreach Communication of Garrahan Hospital, Mr. Arturo Valverde Lyons, Mrs. Janneke Deurloo and Mrs. Macarena Santana. This paper was prepared without external funding.
Conflict of interest
None to report.