Background: Epilepsy is a common neurological condition, in which drugs are the mainstay of treatment and drugs trials are commonplace. Understanding why patients might or might not opt to participate in epilepsy drug trials is therefore of some importance, particularly at a time of rapid drug development and testing; and the findings may also have wider applicability. This study examined the role of patient perceptions in the decision-making process about recruitment to an RCT (the SANAD Trial) that compared different antiepileptic drug treatments for the management of new-onset seizures and epilepsy.
The (perceived) focus of the CTO on medication adherence combined with the variations in understanding within and across groups might not only have consequences for how CTOs are viewed and subsequently experienced, but also for broader goals in patient care and patient and carer involvement.
In this article we reflect on the recruitment of research participants to two related studies of experiences of mental health problems in Black and minority ethnic communities in the United Kingdom. A total of 65 people were recruited via three main strategies: the employment of bicultural recruiters, intensive information sharing about the studies, and work through local community groups. Three main issues seemed to affect recruitment: gatekeepers' attitudes, the (non)payment of participants, and reciprocal arrangements with local community groups. The type of strategy employed resulted in recruits with differing characteristics (although our sample was too small to draw generalizable conclusions). We conclude that to ensure that research participation is accessible to all, researchers must employ flexible recruitment methods that permit adaptation to specific needs arising out of health status, level of involvement with services, culture, and socioeconomic status. Systematic research into this part of the research process is needed.
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