EVALUATION OF THE EFFICIENCY OF COMMUNITY-BASED SCREENING CAMPAIGNS FOR THE DETECTION OF CHAGAS DISEASE IN MADRID: 2014-2017
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EVALUATION OF THE EFFICIENCY OF
COMMUNITY-BASED SCREENING
CAMPAIGNS FOR THE DETECTION
OF CHAGAS DISEASE IN MADRID:
2014-2017
Community-based screening campaigns for the detection of Chagas disease in Madrid
Community-based screening campaigns for the detection of Chagas disease in Madrid
REPORT WRITEN BY:
SALUD ENTRE CULTURAS MUNDO SANO FOUNDATION
Rogelio López-Vélez Sara Angélica Espinoza Sánchez
Ignacio Peña Ruiz María Delmans Flores-Chávez
Begoña Monge Maíllo Juan José Santos Sanz-Bustillo
WORK TEAMS
The Mundo Sano Foundation was the main organizer of the community-based screening
campaigns, and Salud Entre Culturas was the main collaborator. The collaborators in the logistics
and execution were: Salud Entre Culturas (2014-17) and the Prevention and Health Promotion
Department, Madrid Salud, Madrid Town Hall (2017). The collaborators with the analysis of the
samples and the laboratory diagnosis of the infection were: the Microbiology Department of the
Ramón y Cajal Hospital (2014) and the Leishmaniasis and Chagas Disease Unit, National
Microbiology Centre, Instituto de Salud Carlos III (2015-17). All the patients diagnosed through the
development of the campaigns were attended and followed by the clinical group of the Tropical
Medicine Unit of the Ramón y Cajal Hospital (2014-17).
PRINCIPAL COORDINATORS FOR THE ORGANIZATION OF SCREENING CAMPAIGNS
2014-2016: Navarro Beltrán, Miriam (FMS); De Los Santos Sanz-Bustillo, Juan José (FMS).
2017: De los Santos Sanz-Bustillo, Juan José (FMS); Vivas Toro, Francisca (SPPS, MS).
COLLABORATORS IN SCREENING CAMPAIGNS
MUNDO SANO FOUNDATION:
Principal Coordinators: Navarro, Miriam (2014-2016); De Los Santos, Juan Jose (2014-2017); Tato,
Irene (2017). Responsible of Communication: González, Marcela (2014-2016); Arbex; Ana (2017).
Health Workers: Ayna, Altagracia; García, Milene (2014, 2015); Jordan, Mª Briggitte (2014-2017);
Guzmán, Valentina; Arimoza, Celia; Samudio, Miriam; Nelson (2015); Espinoza, Reyna; Sandoval,
Cesar (2016); Lizarasu, Gleisy; Zeballos, Rodolfo; Morales, Lidia; Centeno, Gisel; Coimbra, Augusta
(2016-2017), Pedraza, Juan Carlos (2017). Logistic and administration: Garcia-Velasco, Sandra
(2014-2017). Volunteers from Insud-Pharma (2014-2017). Other Volunteers: Jiménez, Angélica;
Mercado, Evangelina (2014, 2015); Saucedo, Claudia; Astupiña, Jessica; López, Laura;
Antezana, Teresa; Horna, Milagros; Caefa, Pedro (2015); Pardo, Emilia (2015-2016); Rosales, Julia
(2016).
Community-based screening campaigns for the detection of Chagas disease in Madrid SALUD ENTRE CULTURAS: (alphabetical order) Aichner, Harald; Alcaraz, Elena; Álvarez, Lucía; Anoeta, Flavia; Arcas, Cristina; Barranco, Ainoha; Bellas, Lucía; Benítez, Patricia; Blanco, Marta; Campuzano, Pedro (Médicos del Mundo); Carboni, Paloma; Carrillo, Paula ; Chavero, Belén; Coello, Rosa; Corral, Martina; Crespillo, Clara; Delgado, Carolina; Fall, Serigne; Fernández, Pablo; Flández, Marta; Gárate, Igor; García, Ana María; Gayoso, Diego; Gisela; González, Tania; Hernaz, Alejandro (Médicos del Mundo); Jiménez, Beatriz; Lerma, Rosa; López, Marta; Mahdi, Houda; Manini, Patricia; Manzanas, Cristina; Martínez, Verónica; Mejía, Carla; Miguel, Mercedes; Moreno, María; Moreno, Silvia; Moyano, Pilar ; Moza, Helena; Muñoz, Nuria (Médicos del Mundo); Orviz, Eva; Padrino, Sara; Peña, Ignacio; Ramos, Irene; Sánchez, Carla; Sanz, Rodrigo; Torres, Gema; Venanzi, Emmanuele; Vicente, Gema; Wang, Yifán; Yucra, Carolina. TROPICAL MEDICINE UNIT, HOSPITAL RAMÓN Y CAJAL: (alphabetical order) Chacón, Jesús; Chamorro, Sandra; Comeche, Belén; De la Fuente, Sagrario; Gioia, Francesca; Henríquez, César; López-Vélez, Rogelio; Martín, Oihane; Monge, Begoña; Moreno, Liliana; Norman, Francesca; Pérez, José Antonio; Rubio, Ana. LEISHMANIASIS AND CHAGAS DISEASE UNIT, NACIONAL MICROBIOLOGY CENTRE, INSTITUTO DE SALUD CARLOS III, MAJADAHONDA: Flores-Chavez, Maria; Nieto, Javier; García, Emilia; Martínez, Selene; Sánchez, Judith; Pérez, Ismael. PREVENTION AND HEALTH PROMOTION DEPARTMENT, MADRID SALUD, MADRID TOWN HALL: (alphabetical order) Álvarez Castel, Luis (Centro Joven Nurse); Bombín Bombín, Azucena (CMSc Centro health assistant); Fernández Checa, Isabel (CMSc Centro health assistant); Fernández Díaz, Lorena (CMSc Centro Nurse); González Vizcayno, Carmen (Head of Clinical Analysis Laboratory of Technical Unit); Leal García, Ramona (Centro Joven nurse); Madrid Gutierrez, Juan (Section Head of Centro Joven); Morales Vela, Concepción (Associate physician of CMSc Centro); Nacarino-Bravo Perez- Camarero, Mario Rafael (Section Head of CMSc Centro); Palomino Manso, Yolanda (CMSc Centro health assistant); Pato Carralero, Yolanda (CMSc Centro administrative assistant); Pérez López, Mª Gema (Centro Joven health assistant); Vivas Toro, Francisca (Head of Coordination Department of Centros Madrid Salud II from Prevention and Health Promotion Department)
Community-based screening campaigns for the detection of Chagas disease in Madrid
CITATION:
Mundo Sano Foundation, Madrid Salud & Salud Entre Culturas (2018). Evaluation of the
efficiency of community-based screening campaigns for the detection of Chagas disease
in Madrid. Report of the evaluation of the 2014-2017 campaigns. Madrid, Spain.
September, 2018.
“To measure is to know.
If you cannot measure it,
You cannot improve it.”
Attributed to Lord Kelvin
Community-based screening campaigns for the detection of Chagas disease in Madrid
Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
CONTENTS
1. INTRODUCTION ....................................................................................................................................... 1
1.1. JUSTIFICATION ........................................................................................................................................ 3
2.- METHODS .............................................................................................................................................. 3
2.1 POPULATION UNDER STUDY AND LOCATION OF SCREENING POINTS ..................................................... 3
2.2 DESCRIPTION OF THE COMMUNITY-BASED SCREENINGS........................................................................ 4
2.2.1 COMMUNITY-BASED SCREEENINGS DAY ...................................................................................... 7
2.2.2 PERFORMING THE DIAGNOSIC TEST ............................................................................................. 7
2.2.3. TRIANGULATION AND RESULTS COMMUNICATION .................................................................... 8
2.2.4 FIRST MEDICAL APPOINTMENT AT THE TMU-HRYC ..................................................................... 8
2.2.5 SECOND FACE-TO-FACE MEDICAL APPOINTMENT AT THE TMU-HRYC ....................................... 9
2.2.6 MONITORING APPOINTMENTS AT THE TMU-HRYC ...................................................................... 9
2.2.7. POST-TREATMENT APPOINTMENTS ............................................................................................. 9
2.3 EVALUATION OF THE EFFICIENCY OF THE SCREENING CAMPAIGNS – CASCADE FROM DIAGNOSIS TO
TREATMENT ................................................................................................................................................ 11
2.4 IDENTIFICATION OF BARRIERS AND TELEPHONE SURVEY ...................................................................... 13
2.5 DATA ANALYSIS...................................................................................................................................... 14
3.- RESULTS ............................................................................................................................................... 14
3.1 COMMUNITY-BASED SCREENINGS ........................................................................................................ 14
3.2 CASCADE FROM DIAGNOSIS TO TREATMENT ........................................................................................ 18
3.3 IDENTIFYING BARRIERS.......................................................................................................................... 23
4.- DISCUSSION ......................................................................................................................................... 26
4.1 THE RIGHT PLACE AND THE RIGHT MOMENT ........................................................................................ 26
4.2 WHY ARE SOME YEARS WORSE THAN OTHERS? .................................................................................... 26
4.3 BARRIERS ............................................................................................................................................... 29
5.- MODEL ................................................................................................................................................. 32
6.-REFERENCES.......................................................................................................................................... 36
7.- ANNEXES ............................................................................................................................................. 37
SURVEY FORM ............................................................................................................................................. 37
PHOTOS: CAMPAIGNS 2014-2017 ............................................................................................................... 40
Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17 ABBREVIATIONS CAM Comunidad Autónoma de Madrid [Autonomous Community of Madrid] CMS Centro Madrid Salud [Madrid Salud Centre] CNM Centro Nacional de Microbiología [National Centre of Microbiology] ECC Echocardiogram EKG Electrocardiogram HRyC Hospital Ramón y Cajal IIDD Specialist in Infectious Diseases ISCIII Instituto de Salud Carlos III JMD Junta Municipal de Distrito MdM Médicos del Mundo España [Doctors of the World] MS Madrid Salud MSF Mundo Sano Foundation PCR Polymerase Chain Reaction SD Standard Deviation SEC Salud Entre Culturas [“Health Among Cultures”] SPPS Servicio de Prevención y Promoción de Salud de Madrid Salud [Prevention and Health Promotion Department of Madrid Salud] UMT Tropical Medicine Unit
Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
EVALUATION OF THE EFFICIENCY OF COMMUNITY-BASED
SCREENING CAMPAIGNS FOR THE DETECTION OF CHAGAS DISEASE
IN MADRID
1. INTRODUCTION
Chagas disease, or American trypanosomiasis, is a neglected tropical disease caused by the
flagellated protozoan Trypanosoma cruzi (T. cruzi). This parasite is transmitted to humans and
other mammals by the hemipteran insect vectors of the subfamily Triatominae, bloodsuckers,
popularly known (depending on their area of distribution) as conenose bugs, kissing bugs,
chinches, chinchorros, chirimachas, pitos, chipos or barbeiros (Organizacion Panamerica de la Salud,
2018).
The clinical evolution of Chagas disease is complex and consists of an acute phase and a chronic
phase. The acute phase may go by unnoticed in many cases, as its symptomatology can be
mistaken for that of other infectious diseases or because the infected individuals do not show any
symptoms. The chronic phase manifests itself many years after the infection and, depending on
the affected organs, may be confused with other health issues related to the heart or the digestive
tract.
According to the World Health Organisation (WHO):
60% of the individuals who are infected with T. cruzi remain asymptomatic all their lives.
Up to 30% of the individuals in the chronic phase show cardiac alterations.
Up to 10% of the individuals in the chronic phase suffer digestive or neurological
complications, or a combination of both.
In Europe in the year 2009 it was estimated that between 48,000 and 87,000 people were affected
by the disease and, at the same time, it was considered that more that 90% of the infected
population with T. cruzi were unaware of their condition (Basile et al., 2011). Since then, an urgent
need to detect this hidden infection has arisen (Navarro et al. 2017).
Chagas disease has evolved from being an endemic disease in America to spreading globally, due
to the increasing migration flows, and has established itself in non-endemic countries of America,
Asia, Australia and Europe.
1
Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
Outside of its endemic area, Spain is the country with the highest number of imported cases. In
the Autonomous Community of Madrid (CAM) alone resides a third of the population at risk of
infection.
According to the census, a little over 400,000 people of Latin American origin live in the city of
Madrid; the largest populations come from Ecuador, Peru, Colombia, Venezuela and Bolivia. In
agreement with other studies performed in other regions of Spain, we know that the highest
prevalence of the disease exists among those born in Bolivia. In the city of Madrid, there are 27,862
people who were born in Bolivia (including those naturalized Spaniards). Of these, 11,638 are
women of fertile age (between 15 and 44 years old) (Ayuntamiento de Madrid, 2018). As
calculations show that the global prevalence of the disease in the Bolivian population is of 18.1%
(Requena-Méndez et al., 2015), it is estimated that there are at least 5,572 infected individuals
living in Madrid and if we consider that the prevalence in pregnant women living in CAM is
13.6%,(Herrero-Martínez et al., 2018), there are at least 1,583 women in Madrid who might
transmit the disease to their progeny (vertical transmission).
In this context, in order to tackle the challenges of access to diagnosis and treatment of Chagas
disease, the Mundo Sano Foundation (FMS) and other organisations with a multidisciplinary
perspective such as Salud Entre Culturas [“Health Among Cultures”] (SEC) have devoted
themselves to the task of implementing community-based screening campaigns for accessing to
the diagnosis and treatment based on health education and comprehensive medical care of the
patients with Chagas disease. These campaigns have been set in motion through community
activities both outside the healthcare system and inside it, starting in 2014 up to the present day.
These screening campaigns contribute to the adequate detection of Chagas disease and the early
administration of treatment; encourage the circuit of accessing healthcare and monitoring
treatment, thus contributing to the interruption of vertical transmission in women of fertile age;
detecting underage children of parents that come from endemic areas, as well as relatives and
close acquaintances that might have shared the same level of exposure to the parasite.
Community-based screenings generate a positive impact on society, helping to promote
awareness of the disease through all the relationships of any person that has had access to the
information and therefore facilitating the detection of this silent disease. Additionally, these
programs also allow for the diagnosis of other underlying infectious diseases such as tuberculosis,
HIV infection and HBV/HCV infection.
2Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
1.1. JUSTIFICATION
In order to make the most of the resources available it is important to study in depth the evolution
and the results of community-based screening campaigns, how they were carried out, their pros
and cons, and how these factors, together, influenced the loss of participants from when they were
diagnosed by screening and confirmatory tests until completion of the antitrypanosomal therapy
was verified.
This analysis aims to establish a replicable model of community-based screening, as well as the
recommendations to encourage diagnosis and improve access to treatment and monitoring of
patients.
For these reasons, the goals of this report were: i) to evaluate the efficiency in the medical
attention to patients diagnosed through the community-based screening campaigns with T. cruzi
infection, carried out in the city in Madrid between 20014 and 2017; ii) to identify the access
barriers to health services; and iii) to comprehend the reasons behind the non-completion of
treatment once the patients have accessed the healthcare system.
2.- METHODS
2.1 POPULATION UNDER STUDY AND LOCATION OF SCREENING POINTS
The target population was the population of Latin American origin, especially Bolivians, and every
other individual, relative or close acquaintance that might have been exposed to the vector, as well
as the children of mothers who were born in endemic areas.
The screening campaigns for Chagas disease took place in strategic districts where a high number
of people at risk of having been infected with T. cruzi live. At the same time, it was taken under
consideration whether an adequate space to perform the community-based activity was available.
More specifically, we worked in the south and central areas of the city of Madrid. Figure 1 shows
the year and the chosen districts for each campaign.
3Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
2014
2015
2016
2017
Figure 1. Location of the places where the different community-based screenings took place.
2.2 DESCRIPTION OF THE COMMUNITY-BASED SCREENINGS
With the aim of reaching as many people from the target population as possible, the strategy for
organising the screenings consisted in the elaboration of an action plan which started with the
coordination among institutions involved in the healthcare sector, followed by a communication
phase and finishing with a dissemination phase (Figure 2).
The coordination among the local healthcare authorities and NGOs had the objective of having
the support of medical personnel: nurses for the sample extraction, microbiologists for the
performance of diagnostic tests in the laboratory and doctors specialised in internal medicine,
infectious diseases, cardiology and the digestive system to determine or rule out affectation of the
organs as well as to establish the antitrypanosomal therapy and its monitoring.
The aim of the communication phase was to make the screening visible through the different
media targeted towards the population at risk. The activities aimed towards this goal were:
Design of informative posters and postcards
Interviews and advertisements in the media directed towards the target population.
Informative campaigns in social networks and press releases for mass media (contacting
journalists specialised in health and/or immigration).
4Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
Lastly, the dissemination plan had the goal of attracting people in the field; this activity took place
in a transversal way both throughout the period previous to the screening as well as on the same
day of the event. Dissemination consisted of:
Distribution of advertising materials in the areas frequently visited by the target
population such as shops, telephone shops, evangelic churches and transit areas
(underground, train, etc.), and around the area of the location of the screening on the day
of the event.
The organization for the day of the screening consisted of:
The design of the circuit to show the route to the participants, allowing movement in a
quick and orderly manner. We took into account the key points of the screening operation
to extract the sample with total safety and privacy for the patients. The route of the circuit
included: an area for the collection of patient information and the filling in of the informed
consent form by the SEC-HRyC and MS medical personnel, an area for the explanatory
talk by medical personnel and mediators/health representatives of Latin American origin
trained by MSF, and an area for the extraction of samples by the SEC-HRyC and MS
nursing personnel, and an area for childcare service by volunteer SEC-MSF personnel, an
‘amusement’ area, distribution of balloons and salteñas (Bolivian dumplings) or leisure
area for the SEC-FMS personnel.
5Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
BEFORE THE SCREENING
Coordination
with Health
institutions and
Communication
NGOs
Dissemination
(1 month before)
Welcoming and information
gathering
(15 minutes)
SCREENING
Information verification
(3 minutes)
Explanatory talk
(15 minutes)
Sample extraction
(5 minutes)
POST-SCREENING
Lab testing
Infection definition Additional tests
Organ affectation
definition
Trypanocide
treatment
Monitoring
Figure 2. Diagram of the action plan for community-based screenings
6Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
2.2.1 COMMUNITY-BASED SCREEENINGS DAY
The day chosen for the screenings to take place was a Sunday close to the World Chagas Disease
Day, 14th April.
The previous preparation of the spaces and the distribution of tasks among the volunteer
personnel was the responsibility of the coordinators of each work area.
The activity began with the collection of personal and contact information for the later
communication of results. The information was collected following safety measures in accordance
with the (Spanish) Organic Law 15/1999 on the Protection of Personal Data. Depending on the
availability of space and time, the medical personnel or the mediators/health workers of MSF gave
informative talks on Chagas disease, the importance of its diagnosis and its treatment. Later, we
offered them the possibility of performing free diagnostic tests specific for the detection of the
infection with T. cruzi alone in the 2014 and 2015 programmes, and combined with the
determination of the infection with Strongyloides stercoralis, a roundworm that can also produce
chronic infection, in the 2016 and 2017 programs.
Every participant who agreed to the blood sample extraction signed an informed consent form
specific for this study. In every case medical insurance was available, specific for the day of the
event. Between 5 and 10 ml of blood were extracted by venepuncture and were placed in tubes
with gel to facilitate the separation between serum and blood clot.
After the sample extraction, each participant received a traditional Bolivian dumpling, the
“salteña”, and a drink.
To keep children entertained, some volunteers were in charge of performing leisure activities.
Because there was some space available, in the 2016 campaign, there was an outdoor festive
atmosphere.
The closing of the event took place at 14.00.
2.2.2 PERFORMING THE DIAGNOSIC TEST
Once the screening activities had finished, the collected samples were taken to the laboratory to
be processed. In the first campaign, the samples were analysed in the Microbiology department
of the HRyC. In the following campaigns, the serum analysis of the samples was performed in the
Parasitology Department of the CNM, ISCIIII.
At the HRyC, in the 2014 campaign, a chemiluminescence test was performed as a screening test
(ARCHITECT Chagas®, Abbott Laboratories), and as confirming tests the sample was analysed by an
7Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
ELISA (T.cruzi Ab, Dia Pro Diagnostics Bioprobes s.r.l) and indirect immunofluorescence antibody
test (IFAT). At the CNM, during the 2015 and 2016 campaigns, the samples were analysed by 3
serological tests at the same time in blinded manner: conventional ELISA and IFAT using total
antigens (in-house ELISA and IFAT) and recombinant ELISA (recombinant Chagatest v4.0, Wiener,
Argentina); in the 2017 campaign, the screening tests were two ELISA tests, and the infection was
confirmed or ruled out with IFAT.
Once the sample analysis was finished, the lab results were given to the hospital or healthcare
centre through the computerised media of each centre.
2.2.3. TRIANGULATION AND RESULTS COMMUNICATION
The managers/coordinators triangulated the personal and sociodemographic information of
each participant with the lab results in order to classify and define the infection. Depending on
the lab test for the detection of anti-T. cruzi antibodies, the participants were classified as non-
infected individuals (when the serological tests presented negative results); discrepant or
inconclusive status when one of the tests came out positive, and lastly, as infected individuals
when at least two tests came out positive.
The individuals defined as non-infected were notified of the results via telephone calls, an SMS or
a letter.
The individuals classified as infected or discrepant/inconclusive status were given a hospital
appointment. This conciliation was carried out by a member of SEC, and a MSF’s health worker
also collaborated.
If after the first communication an effective contact with the participant did not take place, at least
4 additional telephone calls were made. In 2017, additionally, a reminder with the information of
the date, time and place of the appointment was sent via SMS.
2.2.4 FIRST MEDICAL APPOINTMENT AT THE TMU-HRYC
The circuit inside the healthcare system began when the patient, after scheduling an appointment,
attended the Tropical Medicine Unit (TMU) at the Infectious Diseases Department, where they
were seen by a specialist in infectious diseases (IIDD). In this section, the patients that did not
attend their appointment required the modification/change of the appointment at least four
times. These changes were frequent with patients that had issues regarding work, time and other
factors. (See epigraph 3.3).
8Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
In this first appointment, the specialist informed the patient of the results of the detection of anti-
T. cruzi antibodies tests, performed a clinical evaluation, started a medical history and general
anamnesis and later requested blood tests (general blood count and blood chemistry), T.
cruzi-PCR, a voluntary screening for infectious diseases (HIV, Syphilis, hepatitis B and C infections),
and additional tests (electrocardiogram and echocardiogram). The additional tests involved a
consultation with the cardiology department and, if the patient presented alterations in the
digestive system, a consultation with the gastroenterology department. Together, these tests
meant that the patient had to attend different appointments at least two more times.
2.2.5 SECOND FACE-TO-FACE MEDICAL APPOINTMENT AT THE TMU-HRYC
Once all the additional tests had been performed, the patient had to attend a second face-to-face
appointment. The specialist put together and evaluated the results of the additional tests
(microbiology, radiology, cardiology, blood tests, etc.) to describe the phase of the infection. At
that moment we evaluated whether the patient required more tests such as a Holter, an MRI, etc.
Lastly and together with the patient, their medical history was considered and antitrypanosomal
therapy was indicated/suggested. This phase implied that the patient had to attend, at least, one
more appointment.
2.2.6 MONITORING APPOINTMENTS AT THE TMU-HRYC
In order to start pharmacologic treatment, the patient had to visit Foreign Medicines, with their
prescription (which was valid up to three months after the date of prescription). As the treatment
lasted 60 days, the patient had the option to have their appointment on telephone or attend the
hospital again for a clinical evaluation and/or monitoring of the appearance-related side effects.
The laboratory monitoring during the treatment period consisted of the performance of blood
tests on the fifteenth, thirtieth and forty-fifth day of treatment. At the end of the treatment (60
days) another blood test and T. cruzi PCR were performed in order to rule out the presence of
parasites.
2.2.7. POST-TREATMENT APPOINTMENTS
The first control after treatment was scheduled at 6 months. The subsequent controls were
annual. Patient continuity was not a goal in this report.
The stages of patient’s medical care from the day of the blood sample collection to the post-
treatment monitoring are summed up in figure 3.
All the procedures of the action plan for community-based screenings were performed in
accordance with the Biomedical Research Law 14/2007 and were approved by the Bioethics
committees of the Ramón y Cajal Hospital (2014-2016) and the Instituto de Salud Carlos III (2017).
9Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
-Communication of results
1.- SCREENING -Blood extraction
-Serologic analysis
and provision/arrangement
-Communication of the -Result triangulation
-Sample delivery to lab of hospital appointment to
Infection definition results from lab to hospital positive patients
-First examination, medical -Evaluation in Cardiology,
2.- FIRST history electrocardiogram, Other additional tests:
echocardiogram. chest x-ray, barium enema,
APPOINTMENT -Request for pack of tests: esophageal manometry
Blood test and infectious -Others consultations (minumum of two visits to
Clinical evaluation diseases screening, T. cruzi
PCR
depending on the clinical
status of patient
the hospital)
3.-SECOND -Result integration:
microbiology, cardiology, Treatment
APPOINTMENT radiology, blood analisys,
Patients with symptoms
indication/suggestion
etc. Additional tests: Holter,
(minimum 1 more visit to
Definition of the -Evaluation of the medical
MRI, etc.
the hospital)
disease's stage history with the patient
4.- APPOINTMENTS
FOR MONITORING End of treatment, day 60
-Clinical evaluation, face-to- Day 15, 30,45
OF TREATMENT -Beginning of treatment
face or via telephone -Blood analysis. -Blood analysis and PCR
Adherence to
treatment
-Consecutive follow-up
5.- POST- appointtments, biannual
and annual
TREATMENT -Blood analysis, PCR,
APPOINTMENTS serology
-ECG annual
Figure 3. Diagram with the different steps of the community-based screenings, from the day of the sample extraction to the post-treatment follow-up.
10Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
2.3 EVALUATION OF THE EFFICIENCY OF THE SCREENING CAMPAIGNS –
CASCADE FROM DIAGNOSIS TO TREATMENT
The evaluation of the cascade from diagnosis to treatment was focused on the healthcare
exclusively provided by the Ramón y Cajal hospital (HRyC). In order to determine the efficiency of
the screening campaigns, we analysed the trajectory that the patients with a positive diagnosis for
Chagas disease had to follow once they were referred to the TMU-HRyC. With this aim, a specific
database was created that was filled with: the social-demographic data collected during the
campaign (Salud Entre Culturas - Mundo Sano Foundation and Madrid Salud databases, 2014-
2017 and 2017, respectively), the results for the serologic tests (HRyC and Centro Nacional de
Microbiología [National Centre of Microbiology] databases, 2014 and 2015-2017, respectively),
dates of medical appointments from the appointment book of the TMU-HRyC, clinical data from
the statistic reports and medical histories department of the HRyC (Ramón y Cajal hospital’s
database).
The trajectory of the cascade of patient care was summed up in seven steps (from A to G). The first
step, step A, was defined as the number of people with a confirmed diagnosis of T. cruzi infection.
The second step, step B, contemplated the result communication: this parameter implied
contacting the patients to offer them a medical appointment in hospital. The third step, step C,
consisted in the patient attending their first appointment, the moment in which, besides informing
them of their serology results, the specialist offered the corresponding appointments to perform
the additional tests. Step four, this is, step D, assessed the adherence to the appointments for
their additional tests, therefore completing their healthcare plan. The fifth step, step E, was
defined as the attendance to the appointment with the Tropical Medicine unit (TMU) to evaluate
the additional tests results and to offer/indicate antitrypanosomal therapy. The moment of the
beginning of the antitrypanosomal therapy constituted the sixth step, step F, and finishing it the
seventh, step G. It was assumed that the patient had finished the treatment when the participant
had followed it at least 30 of the 60 prescribed days (table 1).
11Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
Table 1. Parameters evaluated on the cascade from diagnosis to treatment.
Step Parameter Description Sources
A Positive diagnosis People with a confirmed diagnosis who - TMU-HRyC
were detected in a community-based Parasitology Lab data
screening -Results database of the
ISCIII- Parasitology Lab.
B Knowing the result People who were contacted to inform - TMU-HRyC
about their laboratory tests results Appointment Book.
- SEC database
C Attending the First People who attended the first - HRyC Chagas Database.
Appointment appointment at the hospital - TMU-HRyC
Appointment Book.
D Adherence to the People who underwent the requested - HRyC Chagas
additional / additional/complementary tests (blood Database.
complementary analysis, ECC, EKG and others) - TMU-HRyC
tests Appointment Book.
-Charts compiled in-
house
E Knowing the results People who attended the second - HRyC Chagas Database.
of the additional / appointment, received the additional / - TMU-HRyC
complementary complementary tests results and Appointment Book.
tests information regarding the - Charts compiled in-
antitrypanosomal therapy (clinical house
staging)
F Beginning the People who accepted and began the - HRyC Chagas Database.
antitrypanosomal treatment - TMU-HRyC
therapy Appointment Book.
- Charts compiled in-
house
-Medical histories
-Confirmation via
telephone
G Finishing the People who completed at least 30 days of - HRyC Chagas Database.
treatment antitrypanosomal therapy -Medical histories
-Confirmation via
telephone
12Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
2.4 IDENTIFICATION OF BARRIERS AND TELEPHONE SURVEY
After the increase in the abandon level of the monitoring appointments, in the year 2017 a
telephone survey was carried to the patients with a positive or undetermined diagnosis for T. cruzi
or S. stercoralis infection, with the aim of identifying the barriers to diagnosis and treatment
accessing. Through telephone conversation with each patient, we elicited the reasons behind the
absence of attendance to the appointments for the complementary tests, the second
appointment with the TMU-HRyC and the reasons why they did not begin and finish the
antitrypanosomal therapy. Additionally, we hoped to measure the number of patients that had
begun antitrypanosomal therapy treatment since September 2017 (first appointment) to January
2018 (date of the survey).
This survey was only made for the 2017 campaign. We interviewed only those people with whom
a first appointment had been arranged. Contacting the patients took an average of four calls in a
morning and afternoon schedule, for three weeks. The interviews lasted an average of between
six and ten minutes.
To design the questionnaire for the interview (see annex), we started with the information
collected during the first telephone call. This information hinted that the absence to their
appointments was due to different motives that could be summed up in three main categories:
1.- Work and lack of time: long working hours, difficulties in obtaining/arranging work permissions
(e.g. caregivers of the elderly).
2.- Mobility: Vacation periods, long stays away from Madrid or return to their home countries.
3.- Accessibility-Transportation: The distance to the hospital and jobs on the outskirts of Madrid.
The design of the telephone survey was divided in three sections with five questions each. The first
part of the interview intended to “break the ice”, to allow the patient to feel at ease and allowing
them to answer the following questions; the second part was aimed at learning up to which point
they had attended the hospital and, if they had not been able to comply, they were asked why,
giving time for them to explain every motive the person wanted to describe for not attending
hospital; it was partly our intention to reactivate the monitoring of the patients, so information
regarding appointments, changes and modifications to improve adherence to the treatment was
provided.
13Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
2.5 DATA ANALYSIS
The data collected in the database specific for this study were analysed and cross-referenced using
the analytic tools provided by the programs Excel 2013 and IBM SPSS Statistics 22. The database
was updated up to January 2018.
We defined a positive case (infected individual) when at least two serological tests of different
principles came out as positive (see epigraph 2.1.3.). In the configuration of step A of the cascade,
the patients with “initially undetermined results” who were confirmed as positive by the
confirmation tests were included. To estimate prevalence, the patients with undetermined results
who not come back for a second sampling were included among the non-infected individuals.
Regarding clinical evaluation, these patients followed the same path as a person with a positive
diagnosis.
As the 2016 and 2017 campaigns were also targeted for detection of S. stercoralis infection, in the
estimation of the prevalence of Chagas disease patients with a positive serological test for
S. stercoralis were included in the non-infected population, except when they also presented
positive serological test for Chagas disease.
In step G, every patient that did not reach at least 30 days of treatment was discarded. Because
the participants in the 2017 campaign are still in the process of starting antitrypanosomal therapy,
the 2017 data were included/excluded during the construction of the global cascade (figure 7).
3.- RESULTS
3.1 COMMUNITY-BASED SCREENINGS
The goal of the Community-based screenings was the detection of Chagas disease by carrying out
serological tests and later managing patients in a referred hospital.
We carried out four community-based screening campaigns in different locations throughout the
city of Madrid, three in the South district and one in the Central district (figure 1, table 2). Two of
these campaigns, the 2014 and 2015 ones, took place in the month of April, close to the date of
the World Chagas Disease Day (13th, April). The other two, the 2016 and 2017 ones, took place in
May (the second fortnight of the month).
The number of people that took part in the campaign fluctuated, from 219 in 2015 to 667 in 2016.
In these years, one and three individuals -respectively- did not reach the sample extraction point.
In total, 1373 samples were collected, of which 269 presented positive results in the detection of
anti-T. cruzi antibodies. These results correspond to 1364 patients, of whom 266 individuals where
14Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
diagnosed with T. cruzi infection. The difference between the number of samples and the number
of participants is due to the fact that 9 people took part in two consecutive screening campaigns.
Excluding the duplicated cases, the global prevalence was of 19.5% (CI 95%: 17.4-21.7%), except
in the 2015 campaign when it was slightly higher (table 2). The average age of the infected
population was age 42 ±10 years; 68.8% of the total were women (183/266) (figure 4), 96 of which
were within the age range of 15 to 44 years. 97% of those infected were originally from Bolivia
(258/266) (table 3, figure 5).
A) B)
C)
Figure 4. Distribution of age frequencies of the total number of participants according to sex (A);
according to their status regarding to Chagas disease (B) and age distribution of the infected
population according to sex (C)
15Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
Table 2. Description of the year, place, date and institutions involved in the screening campaigns in Madrid, 2014-2017.
Interviewed Tested Positive Prevalence Confidence
Year Place Sunday Institutions
persons persons cases % Interval (95%)
La Perla Mundo Sano Foundation,
2014 Boliviana II bar 13th April Salud Entre Culturas-Hospital 229 229 46 20.1 15.1-25.9
Usera district Ramón y Cajal
Mundo Sano Foundation,
Salud Entre Culturas-Hospital
Asociación de
Ramón y Cajal, Centro
2015 vecinos el Zofío 19th April 219 218 50 22.9 17.5-29.1
Nacional de Microbiología-
Usera district
Instituto de Salud Carlos III,
Cruz Roja
Mundo Sano Foundation,
Salud Entre Culturas-Hospital
Centro Cultural Ramón y Cajal, Centro
2016 Usera 22nd May Nacional de Microbiología- 667 664 128 19.3 16.3- 22.5
Usera district Instituto de Salud Carlos III,
Junta Municipal de Distrito
Usera, Médicos del Mundo
Mundo Sano Foundation,
Salud Entre Culturas-Hospital
Ramón y Cajal, Centro
CMS Centro
Nacional de Microbiología-
2017 Joven 21st May 262 262 45 17.2 12.8-22.3
Instituto de Salud Carlos III,
Centro district
Centros Madrid Salud-
Ayuntamiento de Madrid,
Médicos del Mundo
All campaigns 1368 1364 266 19.5 17.4 –21.7
16Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
Table 3. Sociodemographic characteristics of the participants according to the year of the
campaign.
Chagasic Non-Chagasic
individuals individuals Total
Female Male Female Male
2014 N 29 17 119 64 229
Age Mean 41 42 34 36
DS 10 8 13 13
Minimum 26 30 3 4
Maximum 64 57 62 66
Country of Bolivia 29 17 100 48 194
origin Others 0 0 19 16 35
2015 N 31 19 107 61 218
Age Mean 41 37 37 37
DS 12 10 12 14
Minimum 7 12 4 7
Maximum 72 56 67 62
Country of Bolivia 30 19 79 45 173
origin Spain 1 0 4 1 6
Others 0 0 24 15 39
2016 N 94 34 340 196 664
Age Mean 42 42 37 35
DS 9 10 14 15
Minimum 28 14 1 1
Maximum 64 68 68 73
Country of Bolivia 92 33 251 124 500
origin Ecuador 0 1 26 22 49
Unknown 2 0 1 1 4
Others 0 0 62 49 111
2017 N 30 15 145 72 262
Age Mean 48 44 39 37
DS 9 9 15 17
Minimum 23 28 6 3
Maximum 65 67 76 68
Country of Bolivia 29 12 67 33 141
origin Chile 0 1 1 0 2
Ecuador 0 1 29 11 41
Guatemala 1 0 2 0 3
Paraguay 0 1 8 1 10
Others 0 0 38 27 65
As can be observed in table 3 and figure 5, the distribution of the participants in the screening
campaigns is not proportional to the distribution of the Latin American population residing in
Madrid. In view of the fact that in the four campaigns the predominant population is Bolivian, we
can only estimate de prevalence in this population, which reaches 25.8% (CI 95%: 23.1%-28.6%).
Given the small number of positive cases in the rest of populations, we can only perform a relative
approach to the populations from Ecuador, Paraguay and Spain. The positives rate was 1.6%, 4.3%
17Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
and 1.1%, respectively. The participants whose country of origin was Spain were mainly children
under the age of 18 (75/89). The only case diagnosed in this population was a 7-year-old girl who
was born in July 2008, a date that precedes the implementation of screening programs among
pregnant Latin American women in the Community of Madrid.
Figure 5. Distribution of the participants by country of origin
3.2 CASCADE FROM DIAGNOSIS TO TREATMENT
After building a specific database adapted to the evaluation of the cascade from diagnosis to
treatment, the results of each campaign were analysed independently as well as together as a
whole.
Three patients diagnosed as positive took part in two different campaigns; one of them did not
continue with the monitoring process in spite of having attended two consecutive campaigns. The
other two carried on with the process after participating in the second campaign.
Twelve patients used the campaigns as monitoring controls (1 in 2014, 2 in 2015 and 9 in 2016). Of
these 12, 8 of them had already undergone antitrypanosomal therapy.
As you can see in table 4, the loss at the moment of informing the patients of positive results in
the diagnostic tests (step A-B) was the highest in the 2015 campaign (22%) and reduced in the
following campaigns, but it was never better than the 4.3% of 2014. The impossibility of
transmitting the results was due to mistakes in the participant’s contact telephone record.
The loss at the moment of attending the first hospital appointment was high in the 2016 campaign
but improved in 2017 reaching a level similar to the 2014 campaign (4.9% vs 4.3%, respectively). In
2014, the appointment arrangements were carried out actively by senior and junior doctors from
18Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
the TMU. In 2017, a healthcare representative was in charge of sending reminders via SMS the day
before the appointment. The time which passed between the transmission of the results and the
day of attending the first appointment with the specialist in infectious diseases from the TMU was
25 days in 2014, 75 in 2015, 103 in 2016 and 107 in 2017.
In the 2016 campaign, the lack of attendance to appointments meant the performance of
complementary tests was also higher. In contrast, in 2014 the lowest level of losses was achieved;
it should be mentioned that there was active participation by the junior doctors at the TMU to
motivate patients. On the other hand, in 2017 the number of losses was even higher by
comparison, although this might change, as patients are still waiting for their date of appointment
to perform the complementary tests.
Curiously enough, the lack of attendance to the TMU consultation to receive the results of the
complementary tests, in contrasts with other parameters, is lower in every campaign compared to
the 2014 one. Response on the patient’s side in the later campaigns was better.
Without any doubt, the beginning of the treatment was the moment where most patients were
lost. This loss was significantly high in the year 2016. In this year, the TMU specialists took into
consideration the publication of the results of the BENEFIT study, which showed that
antitrypanosomal therapy had no beneficial effect on the evolution of Chagas disease cardiac
consequence. The indication/offering of antitrypanosomal therapy was different compared to the
earlier campaigns.
The rate of people that did not finish the antitrypanosomal treatment in 2014 and 2015 was similar;
once again the highest number of patients that did not finish the antitrypanosomal therapy was in
2016. The main reason for lack of adherence to treatment was the side effects appearance. It is
necessary to point out that although in table 4 a higher loss can be observed for 2017, this might
change in further updates, because some of the patients from this campaign were currently under
treatments when these estimations were made. Because of this, in the global analysis in order to
evaluate the year 2017’s influence, the data for this year was included/excluded in the estimation
of the losses (figure 7).
Figures 6 and 7 show that the rate of participants that began treatment did not exceed 50%; only
a quarter of the patients diagnosed began treatment. Of the 96 women of fertile age that were
diagnosed during these campaigns, 8 of 17 finished the therapy in 2014, 9 of 17 in 2015, 11 of 53 in
2016 and 2 of 9 in 2017; that is to say, 31.3% of them.
19Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
Table 4. Cascade from diagnosis to treatment of T. cruzi infection, 2014-2017
2014 2015 2016 2017 Global
T. cruzi cases Loss T. cruzi cases Loss T. cruzi cases Loss T. cruzi cases Loss T. cruzi cases Loss
Step
(%) (%) (%) (%) (%) (%) (%) (%) (%) (%)
A. Positive diagnosis 46 (100,0) 50 (100,0) 128 (100,0) 45 (100) 269 (100)
B. Knowing the result 44 (95,7) 2 (4,3) 39 (78,0) 11 (22,0) 106 (82,8) 22 (17,2) 41 (91,1) 4 (8,9) 230 (85,5) 39 (14,5)
C. Attending the first 42 (91,3) 2 (4,5) 30 (60,0) 9 (23,1) 73 (57,0) 33 (31,1) 39 (86,7) 2 (4,9) 184 (68,4) 46 (20,0)
appointment
D. Adherence to the
additional / 40 (87,0) 2 (4,8) 24 (48,0) 6 (20,0) 48 (37,5) 25 (34,2) 24 (53,3) 15 (38,5) 136 (50,6) 48 (26,1)
complementary tests
E. Knowing the results
of the additional / 32 (69,6) 8 (20,0) 21 (42,0) 3 (12,5) 41 (32,0) 7 (14,6) 20 (44,4) 4 (16,7) 114 (42,4) 22 (16,2)
complementary tests
F. Beginning the
antitrypanosomal 23 (50,0) 9 (28,1) 16 (32,0) 5 (23,8) 11 (8,6) 30 (73,2) 12 (26,7) 8 (40,0) 62 (23,0) 52 (45,6)
therapy
G. Finishing the 19 (41,3) 4 (17,4) 13 (26,0) 3 (18,8) 8 (6,3) 3 (27,3) 5 (11,1) 7 (58,3) 45 (16,7) 17 (27,4)
treatment
20Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
60 60
N=11
50 N=2
4,3% N=2
2014 50
22,0%
2015
4,5% N=2
4,8% N=8
N=50 N=9
N=44 20,0%
40 N=42 40 100% 23,1%
N=46 95,7%
91,3% N=40 N=39
100% 87,0% N=9
28,1% 78,0% N=6
20,0%
30 N=32 30
69,6% N=4 N=30 N=3
17,4% 60,0% 12,5% N=5
N=24 23,8%
20 N=23 20 N=3
50,0% 48,0% N=21
N=19 18,8%
42,0%
41,3% N=16
10 32,0% N=13
10
26,0%
0 0
A B C D E F G A B C D E F G
140 N=22 60
17,2%
120
N=33
2016 50
2017
N=4
31,1% 8,9%
N=128 N=2
100 100% N=106 4,9% N=15
N=45
82,8% 40 38,5%
100% N=41
91,1% N=39
80 N=25
86,7%
34,2%
30
N=73 N=7
60 57,0% 16,7%
N=7 N=8
14,6% N=30 N=24 40,0%
20 53,3%
N=48 73,2%
40 N=20
37,5% N=7
N=41 44,4%
58,3%
32,0%
10 N=12
20 N=3
26,7%
27,3%
N=11 N=5
8,6% N=8 11,1%
0 0
6,3%
A B C D E F G A B C D E F G
Figure 6. Cascade from diagnosis to treatment 2014 -2017. Positive diagnosis (A), Knowing the result (B), Attending the first appointment (C), Adherence
to the additional/complementary tests (D), Knowing the results of additional / complementary tests (E), Beginning the antitrypanosomal therapy (F),
Finishing the treatment (G).
21Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
A) All campaigns
300
N=39
14,5%
250 N=46
20,0%
N=269
100% N=230
200 85,5% N=48
26,1%
N=184
68,4% N=22
150 16,2%
N=52
N=136 45,6%
50,6%
100 N=114
42,4% N=17
27,4%
50 N=62
23,0% N=45
16,7%
0
A B C D E F G
B) Excluding 2017 campaign
250
N=35
15,6%
N=44
200 23,3%
N=224
100% N=189
84,4% N=33
23,8%
150
N=145 N=18
64,7% 16,1%
N=44
100 N=112 46,8%
50,0%
N=94
42,0% N=10
20,0%
50
N=50
22,3% N=40
17,9%
0
A B C D E F G
Figure 7. Global cascade from diagnosis to treatment. Including all campaigns (A) and excluding
2017 (B). Positive diagnosis (A), Knowing the result (B), Attending the first appointment (C),
Adherence to the additional/complementary tests (D), Knowing the results of
additional/complementary tests (E), Beginning the antitrypanosomal therapy (F), Finishing the
treatment (G).
22Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
3.3 IDENTIFYING BARRIERS
The telephone survey allowed us to learn at which moment of the hospital attendance trajectory
the patients stopped attending their appointments between their first appointment with the TMU
until the beginning of treatment. Additionally, the survey allowed for the intervention of the
health worker of MSF, who encouraged the reactivation of the treatment process.
For the survey, the 2017 campaign was chosen, given that this year fulfilled two important
requirements: firstly, the recent access to the healthcare system which allowed us to learn whether
the patients received the results for the additional tests performed at the HRyC or not, and
secondly, the high percentage of attendance to the first appointment (91.1%) (Table 4, figure 6).
The number of people we tried to reach in order to complete the survey was 54. These people
knew of their positive diagnosis and had attended the HRyC until January 2018. Of these 54
people, 11 did not answer the phone, 2 refused to answer the survey, and finally 41 of them allowed
us to interview them. Each interview was recorded in a questionnaire; in it, notes were taken and
the appointments for each patient were recorded.
The 41 questionnaires were stratified in three groups: patients diagnosed with Chagas disease
(Group 1, n=33), patients with strongyloidiasis (Group 2, n=8) and “inconclusive” patients (Group
3, n=3) (see annex, tables A, B and C).
The results of the interview were as follows:
25 out of 33 underwent the additional tests; 22 of them were Chagas patients and 3 were
inconclusive patients (these patients had the same consultation monitoring as all the patients
diagnosed with Chagas disease). On the other hand, 8 of 33 of those interviewed did not undergo
the additional tests.
19 out of 33 people interviewed attended their second appointment; 18 of them were Chagas patients
and only one inconclusive patient. On the other hand, 6 of the 33 interviewed did not attend their
second appointment (Table 5).
23Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
Table 5. Patients surveyed in additional tests and second appointment
Patients completing Patients attending
Patients Surveyed additional tests second appointment
YES NO YES NO
Chagas 30 22 8 18 4
Inconclusive 3 3 0 1 2
Total 33 25 8 19 6
Of all the patients interviewed that did attend their second appointment, 14 out of 19 referred
having begun the antitrypanosomal therapy and 7 out of 14 referred having finished it. The rest
did not initiate or continue the antitrypanosomal therapy for different reasons as listed here:
Lack of economic resources: 2 cases
Reaction to treatment: 2 cases
Fear of treatment: 1 case
The doctor did not advise it: 1 case
No comment: 1 case.
The total number of patients interviewed that did not attend hospital was 14. 8 out of 25 patients
did not undergo any additional tests and 6 out of 19 did not attend their second appointment; for
these patients we reactivated the cycle.
Reactivation, in general, consisted of setting new appointments, informing and giving orientation
regarding the treatment by the mediator/health representative. This reactivation also reflected
the interest and the approximated time the patients considered attending the hospital next: 8 of
them in the following days, 3 in the following week and 3 in the following month.
The reasons given by the 14 patients that did not attend their second appointment were:
Pending tests or in process: people who are in this situation are waiting for some health
test, generally an electrocardiogram or an echocardiogram. We also include in this point
those who are having a second ELISA test done. There were 3 of these cases in total.
Leaves of absence or lack of time: this was the most frequent reason and it refers to the
complexity of arranging leaves of absence at work; e.g. a working profile such as a
caregiver implies more logistics when they need to attend hospital. During the interviews
we could observe that work/lack of time was closely related to long working hours and, as
24Community-based screening campaigns for the detection of Chagas disease in Madrid. 2014-17
a consequence, it was more difficult to attend hospital in the mornings. These amounted
to 5 cases (3 of them specifically referred lack of time).
Time abroad: these people provided information related to temporary trips that they
made to their countries of origin. These amounted to two cases.
Working transportation or change of residency: this was the case of people who because
of a new job had to travel outside the Community of Madrid. There was also the case of
change of residency. 2 cases.
Oversight: the patient did not remember the date of the appointment at the hospital. 1
case.
Distance: the patient preferred a hospital closer to their home. 1 case.
The barriers regarding the treatment beginning were related to:
Hospital care: the majority of patients were in the process of undergoing the additional
tests and therefore not enough time had gone by for them to start the treatment.
Patient’s circumstances: the patients do not have enough time available for personal
matters to attend the numerous hospital appointments.
The patients themselves: each person’s perception of the disease. In general, patients do
not feel the need to go to the doctor when there are no symptoms.
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