The Paediatric and Congenital Electrophysiology Society (PACES), a non-profit organisation, is an international society of physicians and allied professionals dedicated to improving the care of children and young adults with cardiac rhythm disturbances. The society’s primary mission is to foster high-quality collaborative research, education, and exchange of ideas on arrhythmia topics that are particularly relevant to infants and children, or patients of any age with CHD. A secondary mission of PACES is to promote awareness of paediatric rhythm disturbances throughout the world and foster international collaboration, especially in underdeveloped and underrepresented regions. The PACES International Committee was created in 2016 with the main aim of facilitating the interaction of paediatric electrophysiology professionals from different areas around the globe within the scope of an interactive network. Within this committee, the ARROW (Assessment of Rhythm Resources arOund the World) initiative was conceived in 2019 in order to identify the global situation of paediatric electrophysiology and evaluate the needs of developing and emerging countries at a global level. While the geopolitical landscape in a country or region is changeable, we hoped that this initial assessment would allow PACES as a society to identify certain regions that might benefit from its involvement. This might include partnering with a neighbouring country via telemedicine, leveraging PACES global footprint to identify philanthropic or industry support to a region, and/or facilitating educational fellowship training in a more advanced region with well-developed paediatric electrophysiology services.
The ARROW designed a survey which was conceived to collect information with the initial aim of identifying specific target areas in which a development strategy could make a difference. The main objectives of this survey were 1) to identify countries that may potentially benefit from PACES strategic initiatives (and those that currently would not), 2) to identify physicians and allied professionals from those countries to partner with PACES, and 3) to identify areas of assistance that would be most beneficial.
Methods
A 21-question online survey was sent to physicians in different countries and/or regions to collect preliminary information regarding the infrastructure and human resource available to manage children with arrhythmias and pacemakers across countries with different income. The survey was in English and was distributed by e-mail to 180 medical doctors from around the world, with an interest in paediatric and congenital arrhythmia management and device therapies from the PACES database. A random sample strategy was selected to choose individuals within the PACES database. The final survey list was verified by PACES international working group to confirm that a geographically well-distributed sample of individuals would be reached. Even if several individuals were reached within the same country, special attention was placed not to duplicate the individuals within geographical regions and/or centres. For practical reasons, responders and centres are used synonymously when reporting results.
This initial survey focused on access to cardiac implantable electronic devices and their follow-up throughout the world. For the purpose of data analysis, the responders were subsequently divided into areas of low/middle and high per capita income. Low-/middle-income countries were defined as those with an annual gross domestic product (GDP) of < 12,000 US Dollars, as per the latest World Economic Database of 2021.1 GDP is defined as the final value of the goods and services produced within the geographic boundary of a country, during a specific period of time, in this case a year.2 GDP was selected as an important indicator of the economic performance of the country.3
Statistic
Continuous variables are expressed as mean +/– SD, or median when more appropriate. Two-sided unpaired t-test was used to compare continuous variables that satisfy the normality assumption. Non-parametric Wilcoxon test was used for data that deviated from normality. Categorical and binary variables are presented as frequencies (percentages). Chi-square and Fisher’s exact test were used to compare the frequency distribution of categorical variables. A p-value of < 0.05 was considered statistically significant.
Results
The ARROW survey was completed and submitted by 42 responders from 28 countries (23% response). Figure 1 depicts the geographical areas that contributed to the survey as per previously GDP description. The responders belong to six out of seven recognised continents (Antarctica being the single non-represented/non-inhabited continent). Low-/middle-income countries are depicted in red and high-income countries are depicted in blue, with South America, Africa, and continental Asia representing the major regions with low/middle income. India located in a low-/middle-income region is the country with most contributors (n = 7), followed by two high-income countries (Germany, n = 4 and United States of America, n = 3). Argentina, Australia, China, and Colombia had all two contributors per country. The rest of the countries were represented by a single centre, all of them located in one of the main urban areas of the country. Overall, half of the participants (n = 21, 50%) represented an area within a low-/middle-income country determined per GDP.
Figure 1. Participants as per country distribution. The geographical areas that contributed to the survey as per previously GDP description are depicted. Low-/middle-income countries are depicted in red and high-income countries are depicted in blue colour.
Congenital cardiology programmes and situation of electrophysiologist practice
The distribution of area of professional expertise is depicted in Figure 2. Nearly 2/3 of the responders practiced paediatric cardiology and paediatric electrophysiology. The main contributors (88%) had an affiliation with a surgical congenital cardiac programme, with the main proportion belonging to an academic institution (45%) providing clinical and invasive electrophysiology and device therapies (67%). The size of the programme was evaluated by considering the number of cardiac surgeries performed per year, number of paediatric cardiologists and number of paediatric electrophysiologists. The median number of paediatric cardiologists per centre was 4 (1 to 70), with a median of 1 paediatric electrophysiologist (0 to 4). The professional practice of most of the participants (77%) included clinical and invasive practice with 53% including a device practice.
Figure 2. Area of professional expertise. The participants’ choices for area of professional expertise are depicted in the form of horizontal bar charts.
Device situation by centre/region
Most of the participants queried (95%) stated that their institutions implant pacemakers and/or implantable cardioverter defibrillators. In 19 centres (69%), the costs of implants were covered by the health insurance system, in 3 cases (10%) the costs were covered by patient and/or family, and in 6 cases (21%) a combination of insurance and self-pay contribution was needed.
Twenty-four (85%) respondents confirmed that all children requiring a permanent pacing system could be equipped by a device in their centre. In 25 (86%) of the centres, legislation forbids re-used devices, with 6 (14%) centres that allow this practice. In two centres, adult professionals (cardiologist or electrophysiologists) were taking care of implant and follow-up of devices in children.
Pacemaker implantation techniques
Regarding the implantation techniques, almost half of the centres (45%) have a policy of transvenous pacemaker implantation starting at the body weight 10–20 kg, followed by the range 20–30 kg (29%). A transvenous system was the first choice in patients < 10 kg in 17% of cases. In 9% of centres, the choice of a transvenous device is left for patients > 30 kg of body weight.
Follow-up of pacemakers
When investigating the strategy of post-implant follow-up, in 72% of the centres (n = 21), participants confirmed that paediatric cardiologists/electrophysiologists were in charge of the device follow-up.
Availability of implantable cardioverter defibrillators
Thirty-nine responders (93%) confirmed availability of implantable cardioverter defibrillators in their centres, corresponding to 26 out of the 29 countries that took part in the survey. In 12% of the responders, implantable cardioverter defibrillators were available in their country of residence but had yet to be implanted in children.
How can PACES provide support to developing regions and countries?
Respondents were asked about the manner and direction by which PACES could provide global collaborative support (Figure 3). The most frequent request from doctors in low-/middle-income areas was overseas training in the form of scholarship (n = 6, 21%), followed by a contribution to attend local scientific meeting programmes (n = 5, 19%). Under “other” different options were provided, including a virtual platform or forum for case discussion, and assistance with provision of cardiac implantable electronic device and/or ablation catheters. Some of the responders from high-income regions for bilateral benefits proposed themselves as contributors to assist the clinical challenges of the less equipped areas in various forms including onsite initiatives in the form of interventional missions, supporting national/regional meetings and collaborating with physician and/or allied professional training.
Figure 3. Collaborative support. The participants’ choices for focus of collaborative support are depicted in the form of horizontal bar charts.
Comparison between low-/middle- versus high-income countries
Table 1 shows the differences in electrophysiology practice and human and technology resources between countries when compared by income. Low-/middle-income regions have a statistically significant difference in terms of availability of an expert on paediatric electrophysiology and the possibility to perform invasive electrophysiology procedures. Moreover, academic affiliations are less frequent than in the higher-income regions. Implant of devices in these areas rely significantly on patient’s resources, which is not the case in the higher-income regions. Finally, the follow-up of the devices differs in the two different economic areas, with paediatric electrophysiologist being involved almost always in the later.
Table 1. Comparison of low-/middle-income versus high-income countries
EP = electrophysiologist; ICD = implantable cardioverter defibrillator; n = number of responders.
Discussion
Although global health inequities have existed for centuries, they have been systemically exposed in lieu of the COVID-19 pandemic during the last 18 months. Our survey demonstrated that the field of paediatric electrophysiology is no exception to these inequalities in regard to access to care and management of cardiac implantable electronic devices globally. It helped identify many areas that could be improved within our field of expertise. We acknowledge that our results may represent a misleading statement as they reflect mainly areas of higher income in which physicians are actively involved in professional networks which facilitate participation in the survey. Moreover, even if all continents were represented, a number of underrepresented and underserved countries within Central and South America and Africa did not respond. It is the plan of PACES to use this initial survey to establish a more robust and comprehensive survey at the 2023 World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS) (Washington DC). In countries where there is neither a paediatric electrophysiologist or adult electrophysiologist involved in the care of children who may require a device, PACES is committed to try and figure out avenues to have regional collaboration to provide such services.
Conclusions
In the first step to evaluate the global needs and potential inequities as it relates to pacemakers and defibrillators, PACES elaborated the ARROW initiative by means of a survey that was sent to a random selection of paediatric cardiologists affiliated to PACES. This initial assessment provided information mainly on the regions that were within the PACES network and thus excluded more secluded areas. The results of this initiative helped identify those regions where colleagues are eager to initiate bilateral collaborations from either side. However, it is difficult to draw definitive conclusions from those areas that had not replied to the survey.
Thus, the next step is to make this “state-of-the-art” assessment within our field more extensive in order to delineate a more realistic global situation per geographic regions. Additional means of identifying under-developed and under-represented region and partnering with neighbouring country should be pursued by different means. Some of the proposed strategies could include in order of complexity: 1. approaching adult cardiologist from countries that did not respond, either through HRS or through the local national cardiology association of these countries; 2. approaching the Ministry of Health in those countries; and 3. involving international organisations (e.g., World Health Organization).
The relevance of collecting some further data during the WCPCCS in 2023 in Washington DC was outlined in order to share the resulting information with the international community and set a plan of action to assist the development of arrhythmia services for children within developing regions of the world.
Limitations
The survey is limited both by paucity of data from many regions of the world and by respondents from individual centres that may not reflect accurately their overall geographical situation. Moreover, the survey was exclusively in English and distributed only by e-mail. These factors may have limited its distribution for linguistic and technological reasons (e.g., in areas with limited Internet accessibility). Finally, within each country, the responders represented in all cases centres in urban regions, thus potentially underrepresenting rural areas. Therefore, this survey does not represent access to paediatric arrhythmia services across countries or regions. In countries with large populations such as India, individual respondents may represent a very small fraction of an entire country. Additionally, other areas of arrhythmia management such as catheter ablations and availability of anti-arrhythmic medications were not surveyed.
Acknowledgements
The authors thank all the colleagues who complete the ARROW survey and the PACES community that supported this initiative.
Financial support
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
Conflict of interest
None.
