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Determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort, perspectives from HPTN 071 (PopART)
Thesis (PhD)--Stellenbosch University, 2025.
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Stellenbosch : Stellenbosch University
2025
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| access_status_str | Open Access |
| author | Bell-Mandla, Nomtha Fundiswa |
| author2 | Nkonki, Lungiswa |
| author_browse | Bell-Mandla, Nomtha Fundiswa Nkonki, Lungiswa |
| author_facet | Nkonki, Lungiswa Bell-Mandla, Nomtha Fundiswa |
| author_sort | Bell-Mandla, Nomtha Fundiswa |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
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Thesis (PhD)--Stellenbosch University, 2025. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/133088 |
| institution | Stellenbosch University (South Africa) |
| language | en_ZA |
| last_indexed | 2026-06-10T12:44:29.748Z |
| license_str | Other — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from SUNScholar — Stellenbosch University Repository |
| publishDate | 2025 |
| publishDateRange | 2025 |
| publishDateSort | 2025 |
| publisher | Stellenbosch : Stellenbosch University |
| publisherStr | Stellenbosch : Stellenbosch University |
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| source_str | SUNScholar — Stellenbosch University Repository |
| spelling | oai:scholar.sun.ac.za:10019.1/133088 Determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort, perspectives from HPTN 071 (PopART) Bell-Mandla, Nomtha Fundiswa Nkonki, Lungiswa Bock, Peter Stellenbosch University. Faculty of Medicine and Health Sciences. Dept. of Global Health. Health Systems and Public Health. HIV infections -- Prevention -- Social aspects HIV infections -- Treatment -- Social aspects AIDS (Disease) -- Prevention AIDS (Disease) -- Treatment UCTD Thesis (PhD)--Stellenbosch University, 2025. Mandla, N. F. 2025. Determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort, perspectives from HPTN 071 (PopART). Unpublished doctoral dissertation. Stellenbosch: Stellenbosch University [online]. Available: https://scholar.sun.ac.za/items/9417321f-a3b2-4bcb-b603-fe90203c3dbb ENGLISH SUMMARY: In 2022, 39 million people were living with HIV (PLWHIV) globally, of whom 20.8 million resided in Eastern and Southern Africa. Despite advances in HIV prevention and treatment interventions in the past decade, new infection and death rates remain high with iniquitous distribution, and HIV treatment coverage remains well below the UNAIDS 95, 95, 95 targets. Accurate data to guide prevention and management interventions remains critical for combatting the HIV epidemic. There remains a need for high-quality research to guide HIV service providers in high-burden settings in the context of limited funds. Longitudinal studies, including community randomised trials (CRTs), randomised controlled trials (RCTs) and cohort designs play a key role in HIV-prevention research. Studies included in the PhD were embedded within the HPTN 071 (PopART) trial, one of the largest community-based HIV-prevention studies ever completed. The aim of this PhD was to evaluate the determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort. In the first study, we aimed to evaluate the association between baseline characteristics and retention of research participants in the PopART population cohort (PC). PC retention was defined as completion of an annual follow-up survey. A total of 38 474 individuals aged 18-44 years enrolled in the PC in South Africa and Zambia were included in the analysis, of whom 15 225 (40%) were aged 18-24 years. Most participants were women (27 139, 71%). Of the 38 474 participants enrolled during the first round of the trial (PC0), 72.6% completed at least one follow-up visit. Retention was lower in men (RR: 0.89; 95% CI: 0.88, 0.91) and higher amongst older participants (RR: 1.22; 95% CI 1.19, 1.25) when comparing ages >35 to 18-24 years. Retention was higher amongst individuals with high socio-economic status (SES) compared to medium SES (RR 1.16; 95% CI 1.14, 1.188) and low SES (RR 1.12; 95% CI 1.09, 1.10). The most common reasons for study termination were relocation outside the study catchment area (66%) and study refusal (23%). In the second study we aimed to describe factors that motivated or deterred research participation in the PopART PC in South Africa. Of the 19 individuals included in this qualitative study, 14 were female and five males. Factors consistently reported as motivating research participation included: access to healthcare, perceived access to HIV knowledge and health education, ease of access to research activities, incentives, research-team composition, rapport with research teams and perceived economic benefits for the community. Community safety and HIV stigma were found to act as significant deterrents for research participation. Bronfenbrenner's ecological theory was able to depict the majority of motivating factors which The aim of the third study was to evaluate whether extended fieldworker shifts (after hours, during the week and on Saturdays) enhanced retention, when compared to traditional weekday shifts in the HPTN 071 (PopART was) trial in South Africa. Data on 16 651 successful visits were included. Successful visit rates were higher when conducting Saturday shifts (14.0 mean successful visits per hour; 95% CI: 11.3-16.6) compared to both regular (4.5 mean successful visits per hour; 95% CI: 3.7-5.3) and late weekday shifts (5.3 mean successful visits per hour; 95% CI: 4.7-5.8) overall and in all subgroup analyses (P<0.001). The successful visit rate higher amongst women than men across all shift types (3.2 vs. 1.3 mean successful visits per hour, p<0.001). Successful visit rates by shift type did not differ significantly by age, over time, by PC round or by community triplet (i.e. a cluster of three communities organised by intervention) The fourth study was a retrospective cost analysis from a provider’s perspective of four retention strategies employed by the PopART research team. The objective of implemented retention strategies was to improve retention outcomes for the population cohort evaluation, within the HPTN 071 (PopART) trial. The cost evaluation utilised a combination of activity-based costing and an ingredients approach. Start-up costs and recurrent costs were included in this cost evaluation. The tokens of appreciation, a non-monetary incentive, were the least costly retention strategy. The total overall costs of the tokens of appreciation, additional enrolments, field worker shifts, and traditional household visits strategy were R2 507 650, R2 808 750, R3 120 595 and R4 049 555, respectively. The cost per retained participant for issuing tokens of appreciation, additional enrolments, field-worker shifts, and the traditional household visits strategy was R234, R343, R375, and R331, respectively. This underscores the financial viability of the tokens of appreciation strategy in the context of HIV-prevention research. The findings in this study could be applied to similar trial implementation settings, making them particularly meaningful for research implemented within communities and households. They provide practical solutions that researchers can implement in the field. My PhD studies in conjunction with published literature have confirmed a range of motivators and barriers to study retention. Findings on out-of-hours shift implementation, the identification of community-level motivations and tokens of appreciation as the most cost-effective retention strategy in an HIV-prevention population-based study are novel findings. Other findings, though described and measured scientifically in this PHD, are confirmed by previous publications, however, remain novel key findings in the context of HIV prevention research within the community-based research setting. The identified factors can be considered at individual, study design and contextual levels. Similar findings applied to both initial engagement (recruitment) and follow-up (retention). Recruitment also impacts retention, in that amongst eligible participants researchers can screen and identify individuals likely to be retained. An example of this is confirming suitable eligible participants. There may be overlap in these categories - for example, weekend shifts may be considered from both a study design and a contextual perspective. Central to these factors and how they impact study participation is the process of engagement between researchers and community members in establishing context specific retention approaches and implementing retention strategies that can provide support and facilitate continued study engagement between individuals and research. Ecological theory level factors can be used to enhance retention approaches for retention benefits and gains. Working together with communities in research, particularly community-based research, as for routine health services, is key to successful outcomes. In the research environment, community engagement supported by community advisory boards is key to this. This engagement can also be considered within the peoplecentred-care framework, which is built on primary healthcare principles and emphasises working with communities to achieve positive outcomes and can be applied in the context of retention in HIV care. All these activities occur within a broader context of burden of disease, available funding and external contexts. In the next section I build on this model, expanding in more depth on key established and novel strategies to improve retention in longitudinal studies. affected research recruitment and retention outcomes for participants. AFRIKAANSE OPSOMMING: Geen opsomming beskikbaar. Doctoral 2025-07-17T10:29:50Z 2025-07-17T10:29:50Z 2025-03 Thesis https://scholar.sun.ac.za/handle/10019.1/133088 en_ZA Stellenbosch University 119 pages : illustrations application/pdf Stellenbosch : Stellenbosch University |
| spellingShingle | HIV infections -- Prevention -- Social aspects HIV infections -- Treatment -- Social aspects AIDS (Disease) -- Prevention AIDS (Disease) -- Treatment UCTD Bell-Mandla, Nomtha Fundiswa Determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort, perspectives from HPTN 071 (PopART) |
| title | Determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort, perspectives from HPTN 071 (PopART) |
| title_full | Determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort, perspectives from HPTN 071 (PopART) |
| title_fullStr | Determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort, perspectives from HPTN 071 (PopART) |
| title_full_unstemmed | Determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort, perspectives from HPTN 071 (PopART) |
| title_short | Determinants, strategies and cost implications for participant recruitment and retention in an HIV-prevention cohort, perspectives from HPTN 071 (PopART) |
| title_sort | determinants strategies and cost implications for participant recruitment and retention in an hiv prevention cohort perspectives from hptn 071 popart |
| topic | HIV infections -- Prevention -- Social aspects HIV infections -- Treatment -- Social aspects AIDS (Disease) -- Prevention AIDS (Disease) -- Treatment UCTD |
| url | https://scholar.sun.ac.za/handle/10019.1/133088 |
| work_keys_str_mv | AT bellmandlanomthafundiswa determinantsstrategiesandcostimplicationsforparticipantrecruitmentandretentioninanhivpreventioncohortperspectivesfromhptn071popart |