The Catalonian Expert Patient Programme for Chagas Disease: An Approach to Comprehensive Care Involving Affected Individuals

Guiu, Isabel Claveria; Mendivelso, Johanna Caro; Essadek, Hakima Ouaarab; Mestre, Maria Asunción González; Albajar-Viñas, Pedro; Prat, Jordi

doi:10.1007/s10903-016-0345-y

Cited by 21 publications

(30 citation statements)

References 6 publications

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“…We observed a larger percentage of women participating in all of the interventions conducted. Other publications had already shown that there was more participation among women than men, both in the awareness events and in their interest and need to perform the screening in relation to Chagas [24,27,28]. According to previous studies, women show more concern and interest in screening, mainly because of feelings of guilt, worry, and responsibility for the potential transmission of the disease to their children [5].…”

Section: Discussionmentioning

confidence: 99%

“…In Catalonia in 2011 the ICS [24] implemented the "Expert Patient in Chagas Disease Program" with the support of the WHO. The methodology that was followed in the sessions was established in the protocol of the "Expert Patient Program" [25], which has been used for other diseases and was adapted to the distinct features that CHD has.…”

Section: Construction Process Of the Community Strategies (2004-2013)mentioning

confidence: 99%

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Comparative evaluation of community interventions for the immigrant population of Latin American origin at risk for Chagas disease in the city of Barcelona

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Introduction Chagas disease presents bio-psycho-social and cultural determinants for infected patients, their family members, close friends, and society. For this reason, diagnosis and treatment require an active approach and an integral focus, so that we can prevent the disease from creating stigma and exclusion, as is actively promoting access to diagnosis, medical attention and social integration Methodology The study was conducted in the Metropolitan Area of Barcelona (Catalonia, Spain) from 2004 to 2017. After an increased detection rates of CHD in our region, the process of construction of community strategies started (2004-2013). Different community interventions with informational, educational, and communication components were designed, developed, implemented, and evaluated. The results of the evaluation helped to determine which intervention should be prioritized: 1) workshop; 2) community event; 3) in situ screening. Afterwards, those strategies were implemented (2014-2017). Results Each of the three strategies resulted in a different level of coverage, or number of people reached. The in situ screening interventions reached the highest coverage (956 persons, 58.98%).Clear differences exist (p-value<0.001) between the three strategies regarding the

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Section: Discussionmentioning

confidence: 99%

Section: Construction Process Of the Community Strategies (2004-2013)mentioning

confidence: 99%

Comparative evaluation of community interventions for the immigrant population of Latin American origin at risk for Chagas disease in the city of Barcelona

et al. 2020

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“…These patients must be monitored by a multidisciplinary team with the presence of a psychologist and social worker. The creation of associations of people with CD in communities and initiatives such as The Catalonian Expert Patient Program on Chagas Disease should be adopted to increase patients' knowledge about the disease, provide social and emotional support to patients, and promote self-care [25,48].…”

Section: Discussionmentioning

confidence: 99%

Challenges in the care of patients with Chagas disease in the Brazilian public health system: A qualitative study with primary health care doctors

et al. 2020

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Background Care to patients with Chagas disease (CD) is still a challenge for health systems in endemic and non-endemic countries. In the Brazilian public health system, the expansion of Primary Health Care (PHC) services to remote and disadvantaged areas has facilitated the access of patients with CD to medical care, however this is in a context where care gaps remain, with insufficient public funding and inadequate distribution of services. Considering the need for studies on care to patients with CD in different settings, this study explored the challenges of family doctors to provide care to patients with CD in an endemic region in Brazil with high coverage of public PHC services. Methods and findings This is a qualitative study. A focus group with 15 family doctors was conducted in a municipality participating in a multicenter cohort that monitors almost two thousand patients with CD in an endemic region in Brazil. The data were analyzed using a thematic content analysis technique. The family doctors pointed out the following challenges for care to patients with CD: unsatisfactory medical training (academic education not suitable for the clinical management of the disease, and lack of training on CD in PHC); uncertainties regarding antiparasitic treatment in the chronic phase of the disease; difficulty in patients’ access to specialized care when necessary, especially to the cardiologist; and trivialization of the disease by patients as a barrier to seeking care. Conclusion The access of CD patients to adequate medical care, even in regions with high coverage of public PHC services, still represents an important challenge for health systems. The results of this study may contribute to the development of strategies to improve the clinical management of CD in PHC.

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“…Overall, CD shows complex interactions and dependencies: It is not possible to treat with infestation rates >3% and the lack of perceived effective antiparasitic and symptomatic treatment options undermines the motivation for primary and secondary prevention. Holistic approaches against NTDs [ 57 ] and community/patient empowerment [ 58 , 59 ] could help to overcome those structural barriers.…”

Section: Discussionmentioning

confidence: 99%

“We have already heard that the treatment doesn't do anything, so why should we take it?”: A mixed method perspective on Chagas disease knowledge, attitudes, prevention, and treatment behaviour in the Bolivian Chaco

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Background Chagas disease (CD) is highly endemic in the Bolivian Chaco. The municipality of Monteagudo has been targeted by national interventions as well as by Médecins Sans Frontières to reduce infection rates, and to decentralize early diagnosis and treatment. This study seeks to determine the knowledge and attitudes of a population with increased awareness and to identify remaining factors and barriers for sustained vector control, health care seeking behaviour, and access, in order to improve future interventions. Methodology/Principal findings A cross-sectional survey was conducted among approximately 10% (n = 669) of the municipality of Monteagudo’s households that were randomly selected. Additionally, a total of 14 in-depth interviews and 2 focus group discussions were conducted with patients and key informants. Several attitudes and practices were identified that could undermine effective control against (re-)infection. Knowledge of clinical symptoms and secondary prevention was limited, and revealed specific misconceptions. Although 76% of the participants had been tested for CD, only 18% of those who tested positive concluded treatment with benznidazole (BNZ). Sustained positive serologies after treatment led to perceived ineffectiveness of BNZ. Moreover, access barriers such as direct as well as indirect costs, BNZ stock-outs and a fear of adverse reactions triggered by other community members made patients opt for alternative treatments against CD such as veterinary ivermectin, used by 28% of infected participants in our study. The lack of accessible care for chronic complications as well as socioeconomic consequences, such as the exclusion from both job opportunities and bank loans contributed to the ongoing burden of CD. Conclusions/Significance Large scale interventions should be accompanied by operational research in order to identify misconceptions and unintended consequences early on, to generate accessible data for future interventions, and for rigorous evaluation. An integrated, community-based approach tackling social determinants and including both traditional and animal health sectors might help to overcome current barriers and advocate for patients’ rights.

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The Catalonian Expert Patient Programme for Chagas Disease: An Approach to Comprehensive Care Involving Affected Individuals

Cited by 21 publications

References 6 publications

Comparative evaluation of community interventions for the immigrant population of Latin American origin at risk for Chagas disease in the city of Barcelona

Comparative evaluation of community interventions for the immigrant population of Latin American origin at risk for Chagas disease in the city of Barcelona

Challenges in the care of patients with Chagas disease in the Brazilian public health system: A qualitative study with primary health care doctors

“We have already heard that the treatment doesn't do anything, so why should we take it?”: A mixed method perspective on Chagas disease knowledge, attitudes, prevention, and treatment behaviour in the Bolivian Chaco

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