Frail older adults' experience of participating in clinical trials

Abstract

Purpose: The purpose of this research was to address the gap in the literature related to frail older adults' experience of participating in clinical trials. Background: Frail older adults are generally underrepresented in the population of research volunteers from which evidence-based guidelines are derived. To improve care for frail older adults, research must be expanded to specifically target this population. Most of the users of healthcare today are greater than 65 years old, use more health care services than any other age cohort and suffer from coexisting illnesses for which they take several prescribed medications. Since the number of elders is increasing within the general population, it is important to reach a more thorough understanding of frail older adults' experience. Acquiring a better understanding of their experience will give the investigator more insight into barriers of recruitment, retention, and factors affecting elders' decision to participate in research. Method: Using a qualitative descriptive approach involving semi-structured interviews, a cohort of participants age 65 and older was asked about their experience of participating in research studies. Data analysis used an interpretive paradigm involving the methods of Miles, Huberman, and Saldana (2014). Results: Participants identified the main factors influencing their decision to participate as the opinions and encouragement of family members with the strongest influence being a recommendation from their doctor. Participants were varied in the emotions evoked by their participation in the study procedures. The majority of participants stressed how important it was to them to receive feedback in the form of results of studies in which they had participated. The majority of participants stated that receiving feedback or research results was the exception. Conclusions: Data generated from this study related to the experience of frail elder participation in clinical trials will be useful in designing future clinical trials to be more inclusive of this patient population. Keywords: frail elders, research participation, clinical trials, chronic illness, qualitative, multmorbidity