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Impact of community engagement and social support on the outcomes of HIV-related meningitis clinical trials in a resource-limited setting

Article scientifique 2020 Anglais

Résumé

BACKGROUND: Clinical 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Community engagement and social support are important aspects of clinical research and should be incorporated into clinical trial design and conduct. TRIAL REGISTRATION: ClinicalTrials.gov number, NCT01075152 and NCT01802385.

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Kwizera, R., Sadiq, A., Ndyetukira, J. F., Nalintya, E., Williams, D. A., Rhein, J., Boulware, D. R., Meya, D. B., Musubire, A. K., Nabeta, H. W., Kambugu, A., Manabe, Y. C., Ahimbisibwe, C., Kugonza, F., Elbireer, A., Lukande, R., Akampurira, A., Wagubi, R., Kajumbula, H., Najjuka, G., Nanteza, C., Namawejje, M., Ssennono, M., Kiragga, A., Mpoza, E., Kiggundu, R., Tugume, L., Ssebambulidde, K., Kirumira, P., Namuju, C., Luggya, T., Kaboggoza, J., Laker, E., Namudde, A., Muzoora, C., Taseera, K., Ndyatunga, L., Memela, B., Noeme, B., Ninsiima, E., Mwesigye, J., Mushagara, R., Rolfes, M. A., Hullsiek, K. H., Rajasingham, R., Lo, M., Nielsen, K., Bergemann, T. L., Bohjanen, P. R., Scriven, J., Janoff, E. N., Fossland, N., Rani, M. S., Carlson, R. D., Birkenkamp, K., Butler, E. K., McDonald, T., Strain, A. K., Wiesner, D. L., Hohenberg, M. V., Vogt, A., Botker, G., Bahr, N. C., Yasukawa, K., Baker, J. V., Lofgren, S. M., Stadelman, A., Bangdiwala, A., Schutz, C., Thienemann, F., Meintjes, G., Sigila, Y., Magwayi, M., Hassanally, L., Bicanic, T., & Haddow, L. (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. https://doi.org/10.1186/s40900-020-00228-z

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Auteur(s)

Richard Kwizera Alisat Sadiq Jane Francis Ndyetukira Elizabeth Nalintya Darlisha A Williams Joshua Rhein David R. Boulware David B. Meya Abdu K Musubire Henry W. Nabeta Andrew Kambugu Yukari C. Manabe Cynthia Ahimbisibwe Florence Kugonza Ali Elbireer Robert Lukande Andrew Akampurira Robert Wagubi Henry Kajumbula Grace Najjuka Catherine Nanteza Mariam Namawejje Mark Ssennono Agnes Kiragga Edward Mpoza Reuben Kiggundu Lillian Tugume Kenneth Ssebambulidde Paul Kirumira Carolyne Namuju Tony Luggya Julian Kaboggoza Eva Laker Alice Namudde Conrad Muzoora Kabanda Taseera Liberica Ndyatunga Brian Memela Busingye Noeme Emily Ninsiima James Mwesigye Rhina Mushagara Melissa A. Rolfes Kathy Huppler Hullsiek Radha Rajasingham Melanie Lo Kirsten Nielsen Tracy L. Bergemann Paul R. Bohjanen James Scriven Edward N. Janoff Nicholas Fossland M. Sandhya Rani Renee Donahue Carlson Kate Birkenkamp Elissa K. Butler Tami McDonald Anna K. Strain Darin L. Wiesner Maximilian von Hohenberg A. Vogt Grant Botker Nathan C. Bahr Kosuke Yasukawa Jason V. Baker Sarah M Lofgren Anna Stadelman Ananta Bangdiwala Charlotte Schutz Friedrich Thienemann Graeme Meintjes Yolisa Sigila Monica Magwayi Leya Hassanally Tihana Bicanic Lewis Haddow

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