An e-registry for household contacts exposed to multidrug resistant TB in Mongolia

Abstract

Background: The WHO recommends that individuals exposed to persons with multidrug resistant tuberculosis (MDRTB) should be screened for active TB and followed up for 2 years to detect and treat secondary cases early. Resource prioritisation means this is rarely undertaken and where it is performed it's usually using a paper-based record, without collation of data. Electronic data collection into a web-based registry offers the opportunity for simplified and systematic TB contact surveillance with automatic synthesis of data at local, regional and national level. This pilot study was designed to explore the feasibility of usage of a novel e-registry tool and explore obstacles and facilitating factors to implementation. Methods: In parallel with their paper records, seven dispensaries in Ulaanbaatar, Mongolia collected standardized data electronically using Open Data Kit (ODK). Patients with MDRTB and their contacts were recruited during a single clinic visit. Staff and patients were interviewed to gain insights into acceptability and to identify areas for improvement. Results: Seventy household contacts of 32 MDR-TB index patients were recruited. 7/70 contacts (10%) traced had active TB at the time they were recruited to the e-registry. Paper registry satisfaction was low; 88% of staff preferred the e-registry as it was perceived as faster and more secure. Patients and their contacts were generally supportive of the e-registry; however, a significant minority 10/42 (24%) of index cases who were invited, declined to participate in the e-registry, with data security cited as their top concern. Conclusion: E-registries are a promising tool for MDRTB contact tracing, but their acceptability amongst patients should not be taken for granted.

Drug-Resistant Tuberculosis Case-Finding Strategies: Scoping Review

“…Naker et al [ 84 ] described a qualitative study in Mongolia to assess the feasibility and acceptability of an e-registry tool to simplify the systematic screening of MDR-TB contacts. Of 42 index cases invited to take part in the pilot study, 10 declined participation due to concerns about data security.…”

Factibilidad de una aplicación móvil para el monitoreo de contactos de tuberculosis multidrogorresistente en Perú

“…Esto es consistente con el cuestionario de aceptabilidad donde el 84% de los encuestados estimó un tiempo menor de 30 minutos. Estudios de factibilidad en Botswana y Mongolia informan cifras similares por registro individual de contactos de 3 y 6 minutos respectivamente (7,10) . La aceptabilidad del AM-ODK fue alta.…”

“…Las opiniones de los once CI que completaron el registro electrónico fueron importantes y todos los encuestados manifestaron comodidad con el uso del AM-ODK; la consideraron una herramienta beneficiosa para la mejora de salud. Se manifestó una opinión positiva respecto a la eficiencia del tiempo y sobre el ahorro del uso de papel, lo cual coincidió con hallazgos de estudios previos que utilizaron esta tecnología (10)(11) .…”

“…El 10% de los encuestados estuvieron preocupados por la confidencialidad del estudio, específicamente por el uso que se daría a sus datos. Esta fue también la principal preocupación (39%) para los encuestados en otro estudio con esta misma tecnología ODK en Mongolia, además de la relacionada con la pérdida de datos y el intercambio de información personal (10) . Otros estudios que utilizan tecnologías móviles en pacientes con VIH en Perú también han reportado inseguridad de los usuarios por el manejo de sus datos personales (12)(13) .…”