Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality

Abstract

Prevalence of pediatric HIV disclosure is low in resource-limited settings. Innovative, culturally sensitive, and patient-centered disclosure approaches are needed. Conducting such studies in resource-limited settings is not trivial considering the challenges of capturing, cleaning, and storing clinical research data. To overcome some of these challenges, the Sankofa pediatric disclosure intervention adopted an interactive cyber infrastructure for data capture and analysis. The Sankofa Project database system is built on the HUBzero cyber infrastructure (https://hubzero.org), an open source software platform. The hub database components support: (1) data management – the “databases” component creates, configures, and manages database access, backup, repositories, applications, and access control; (2) data collection – the “forms” component is used to build customized web case report forms that incorporate common data elements and include tailored form submit processing to handle error checking, data validation, and data linkage as the data are stored to the database; and (3) data exploration – the “dataviewer” component provides powerful methods for users to view, search, sort, navigate, explore, map, graph, visualize, aggregate, drill-down, compute, and export data from the database. The Sankofa cyber data management tool supports a user-friendly, secure, and systematic collection of all data. We have screened more than 400 child–caregiver dyads and enrolled nearly 300 dyads, with tens of thousands of data elements. The dataviews have successfully supported all data exploration and analysis needs of the Sankofa Project. Moreover, the ability of the sites to query and view data summaries has proven to be an incentive for collecting complete and accurate data. The data system has all the desirable attributes of an electronic data capture tool. It also provides an added advantage of building data management capacity in resource-limited settings due to its innovative data query and summary views and availability of real-time support by the data management team.

High prevalence of non-adherence to antiretroviral therapy among undisclosed HIV-infected children in Ghana

“…The details of the SANKOFA study design and study population have been published elsewhere (Catlin et al, 2015; Reynolds et al, 2015). In brief, the SANKOFA study is a site-randomized clinical trial that is testing a structured disclosure intervention for caregivers of HIV-infected children at two sites in Ghana (Reynolds et al, 2015).…”

Prevalence and correlates of depression among caregivers of children living with HIV in Ghana: findings from the Sankofa pediatric disclosure study

“…The rationale, organization, and recruitment of the subjects for the Sankofa study have been previously described (Catlin et al, 2015;Paintsil et al, 2015;Reynolds et al, 2015). The study is ongoing in the two main teaching hospitals in Ghana, Korle-Bu Teaching Hospital in Accra and Komfo-Anokye Teaching Hospital in Kumasi.…”