“You would not be in a hurry to go back home”: Patients’ willingness to participate in HIV/AIDS clinical trials at a clinical and research facility in Kampala, Uganda
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Date
2020Author
Sebatta, Deborah Ekusai
Siu, Godfrey
Nabeta, Henry W.
Anguzu, Godwin
Walimbwa, Stephen
Lamorde, Mohammed
Bukenya, Badru
Kambugu, Andrew
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Background: Few studies have examined factors associated with willingness of people living with HIV (PLHIV) to
participate in HIV treatment clinical trials in Sub-Saharan Africa. We assessed the factors associated with participation of
PLHIV in HIV treatment clinical trials research at a large urban clinical and research facility in Uganda.
Methods: A mixed methods study was conducted at the Infectious Diseases Institute (IDI), adult HIV clinic between
July 2016 and January 2017. Data were collected using structured questionnaires, focused group discussions with
respondents categorised as either participated or never participated in clinical trials and key informant interviews with
IDI staff. A generalized linear model with a logit link function was used for multivariate analyses while the qualitative
data were summarized using a thematic approach.
Results: We enrolled a total of 202 and analysed 151 participants, 77 (51%) of whom were male with mean age of 41
years. The majority 127 (84%) expressed willingness to participate in treatment clinical trials if given an opportunity. At
bivariate analysis, willingness to participate was significantly associated with respondents’ perception of a satisfactory
compensation package (P-value < 0.002, 0.08–0.56), special status accorded (P-value < 0.001, 0.05–0.39) and belief that
their health status would improve (P-value< 0.08, 0.03–0.58) while on the clinical trial. At multivariate analysis, a
satisfactory compensation package (P-value< 0.030, 0.08–0.88) and special status accorded in clinical trials (P-value<
0.041, 0.01–0.91) remained significant. The qualitative data analysis confirmed these findings as participants valued the
privilege of jumping the clinic waiting queues and spending less time in clinic, the wide range of free tests offered to
trial participants, unrestricted access to senior physicians and regular communication from study team. Additionally,
free meals offered during clinic visits meant that participants were not in a hurry to go back home. Barriers to
participation included the perception that new drugs were being tested on them, fear of side effects like treatment
failure and the uncertainty about privacy of their data.
Conclusion: We found overwhelming willingness to participate in HIV treatment clinical trials. This was largely
extrinsically influenced by the perceived material and health-related benefits. Investigators should pay attention to
participants’ concerns for benefits which may override the need to understand study procedures and risks.