Impact of Community Engagement and Social Support on The Outcomes of HIV Related Meningitis Clinical Trials in a Resource-Limited Setting

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dc.contributor.authorKwizera, Richard
dc.contributor.authorSadiq, Alisat
dc.contributor.authorNdyetukira, Jane Frances
dc.contributor.authorNalintya, Elizabeth
dc.contributor.authorBoulware, David R.
dc.contributor.authorMeya, David B.
dc.contributor.authoron behalf of the COAT and ASTRO trial teams
dc.date.accessioned2022-08-19T15:35:24Z
dc.date.available2022-08-19T15:35:24Z
dc.date.issued2020
dc.description.abstractClinical trials remain the cornerstone of improving outcomes for HIV-infected individuals with cryptococcal meningitis. Community engagement aims at involving participants and their advocates as partners in research rather than merely trial subjects. Community engagement can help to build trust in communities where these trials are conducted and ensure lasting mutually beneficial relationships between researchers and the community. Similarly, different studies have reported the positive effects of social support on patient’s outcomes. We aimed to describe our approach to community engagement in Uganda while highlighting the benefits of community engagement and social support in clinical trials managing patients co-infected with HIV and cryptococcal meningitis. We carried out community engagement using home visits, health talks, posters, music and drama. In addition, social support was given through study staff individually contributing to provide funds for participants’ food, wheel chairs, imaging studies, adult diapers, and other extra investigations or drugs that were not covered by the study budget or protocol. The benefits of this community engagement and social support were assessed during two multi-site, randomized cryptococcal meningitis clinical trials in Uganda. We screened 1739 HIV-infected adults and enrolled 934 with cryptococcal meningitis into the COAT and ASTRO-CM trials during the period October 2010 to July 2017. Lumbar puncture refusal rates decreased from 31% in 2010 to less than 1% in 2017. In our opinion, community engagement and social support played an important role in improving: drug adherence, acceptance of lumbar punctures, data completeness, rate of screening/referrals, reduction of missed visits, and loss to follow-up. Community engagement and social support are important aspects of clinical research and should be incorporated into clinical trial design and conduct.en_US
dc.identifier.citationKwizera, R., Sadiq, A., Ndyetukira, J. F., Nalintya, E., Williams, D., Rhein, J., ... & Meya, D. B. (2020). Impact of community engagement and social support on the outcomes of HIV-related meningitis clinical trials in a resource-limited setting. Research involvement and engagement, 6(1), 1-7.https://doi.org/10.1186/s40900-020-00228-zen_US
dc.identifier.issn2056-7529
dc.identifier.urihttps://nru.uncst.go.ug/handle/123456789/4332
dc.language.isoenen_US
dc.publisherResearch Involvement and Engagementen_US
dc.subjectPatient public involvement, Community engagement, Social support, Cryptococcal meningitis, HIV, Clinical trials, Sub-Saharan Africaen_US
dc.titleImpact of Community Engagement and Social Support on The Outcomes of HIV Related Meningitis Clinical Trials in a Resource-Limited Settingen_US
dc.typeArticleen_US
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