Establishing communication challenges and preferences among clinical trial participants in an under-resourced setting to improve adherence to study visits and participant retention

• Published in: Clinical trials (London, England) Vol. 19; no. 1; pp. 81 - 85
• Main Authors: Mapetla, Katlego, Malahleha, Mookho, van Niekerk, Nadia, Thindisa, Dineo, Mpete, Lebogang, Ahmed, Khatija, Dilraj, Athmanundh
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01-02-2022; Sage Publications Ltd
• Subjects: Adult; AIDS Vaccines; Cell Phone; Cell phones; Cellular communication; Cellular telephones; Clinical trials; Clinical Trials as Topic; Communication; Female; HIV; Human immunodeficiency virus; Humans; Male; Medical research; Polls & surveys; Questions; Receiving; Research facilities; Retention; Short message service; Telephone; Text Messaging; Time of use; Vaccines; cellphone; clinical trials; communication challenges; adherence; Participant retention
• ISSN: 1740-7745; 1740-7753
• DOI: 10.1177/17407745211062077

Background
Ensuring protocol visit compliance and maintaining high participant retention remain critical elements of clinical trials. In the HVTN 702 HIV vaccine trial, Setshaba Research Centre in Soshanguve, Tshwane, South Africa, experienced challenges in communicating with participants to remind them about their study visits. In order to improve participants adhering to their study visits, and study retention, we aimed to identify challenges in mobile communication, and to establish preferences in communication methods and interest in receiving study information via cellphones.
Methods
We conducted a paper-based survey among HVTN 702 HIV vaccine trial participants at Setshaba Research Centre. The survey comprised of dichotomous and scale questions and was completed voluntarily and anonymously. The questions included those on their primary form of communication (calling, SMS and WhatsApp), the best time of day for the site to communicate with them, whether they were interested in receiving regular general study information updates via their cellular phone, how often they changed their cellular phones and/or network, whether they experienced any challenges with their cellular phones and what these challenges were, if any. All participants scheduled to visit the clinic from February to May 2019 were invited to participate. Thus, 90 of 380 (24%) participants enrolled by May 2019 were surveyed.
Results
The majority (68%) of participants were 26−35 years old and almost three-quarters (73%) were female. Almost all participants (99%) had a personal cellphone. Half of the participants experienced some challenge related to cellphones, these being poor network signal at home (12%), battery running flat frequently (11%), sharing their phone (9%), lack of data (9%), challenges with use of applications (6%) and their cellphones being unreliable (3%). Annually, 20% of participants made a single or multiple network changes. Communication preferences were calls by site staff (80%), SMS (16%) and WhatsApp (3%). Most preferred to be contacted in the morning (49%) or afternoon (31%). Site contact was rated as ‘very helpful’ (87%), and 97% were interested in receiving regular general study information updates via their cellphone.
Conclusion
Despite participants owning cellphones, there are still technical challenges, for example, network signals, battery-charging and applications. The majority of participants preferred being called rather than communicating by text messages or WhatsApp. Future studies need to include addressing participant challenges in maintaining contact and training of participants on use of cellphone applications to optimise communication. Noting the preferred time of day for participants to be called might improve the likelihood of making contact with them. The willingness to receive updates will aid in keeping participant interest high and enhance retention.