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1.
J Clin Transl Sci ; 7(1): e245, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38033704

RESUMEN

Introduction: Routine patient care data are increasingly used for biomedical research, but such "secondary use" data have known limitations, including their quality. When leveraging routine care data for observational research, developing audit protocols that can maximize informational return and minimize costs is paramount. Methods: For more than a decade, the Latin America and East Africa regions of the International epidemiology Databases to Evaluate AIDS (IeDEA) consortium have been auditing the observational data drawn from participating human immunodeficiency virus clinics. Since our earliest audits, where external auditors used paper forms to record audit findings from paper medical records, we have streamlined our protocols to obtain more efficient and informative audits that keep up with advancing technology while reducing travel obligations and associated costs. Results: We present five key lessons learned from conducting data audits of secondary-use data from resource-limited settings for more than 10 years and share eight recommendations for other consortia looking to implement data quality initiatives. Conclusion: After completing multiple audit cycles in both the Latin America and East Africa regions of the IeDEA consortium, we have established a rich reference for data quality in our cohorts, as well as large, audited analytical datasets that can be used to answer important clinical questions with confidence. By sharing our audit processes and how they have been adapted over time, we hope that others can develop protocols informed by our lessons learned from more than a decade of experience in these large, diverse cohorts.

2.
AIDS Care ; 32(1): 104-112, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31554414

RESUMEN

Adolescents living with HIV (ALHIV, ages 10-19) are retained in care at low rates, resulting in poor clinical outcomes. We investigated barriers and facilitators to retention experienced by perinatally infected ALHIV in western Kenya. This qualitative study purposefully sampled hospitalized ALHIV (engaged and not currently engaged in care), ALHIV engaged in outpatient care, and caregivers of ALHIV. In total, 116 ALHIV and caregivers participated in interviews or focus group discussions. Challenges related to the effects of both stigma and poverty at multiple socio-ecological levels pose the greatest barriers to adolescent retention in HIV care. Adolescents with positive relationships with family, clinic, and/or peers with the resources to support their care are facilitated to overcome these barriers. Conversely, adolescents with few of these supports due to orphanhood, caregiver illness, severe poverty, family conflicts, negative relationships with healthcare workers, or isolation, have the greatest challenges staying in care, and maybe at risk of disengagement. Experiences of trauma emerged from narratives of disengagement, and contribute to isolation, mental health challenges, and difficulties engaging in care. Retention of the most vulnerable adolescents will require interventions to mitigate the impacts of stigma, poverty, mental health issues, and limited social support on HIV care engagement.


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Infecciones por VIH/tratamiento farmacológico , Adolescente , Adulto , Instituciones de Atención Ambulatoria , Cuidadores , Niño , Femenino , Grupos Focales , Infecciones por VIH/epidemiología , Infecciones por VIH/psicología , Humanos , Kenia/epidemiología , Masculino , Salud Mental , Grupo Paritario , Pobreza , Investigación Cualitativa , Estigma Social , Apoyo Social , Adulto Joven
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