Improving a Case-Control Study of Multiple Sclerosis Using Formative Research

Abstract

Formative research (i.e. focus groups and key informant interviews) was conducted to understand risk perceptions and identify barriers to participation in a case-control study of environmental exposures and genetic susceptibility as risk factors for multiple sclerosis (MS). Individuals with MS were recruited to participate in a focus group discussion and individual interviews. Participants were asked to review and comment on study materials and process including participation, interview, genetic testing, confidentiality, and questionnaire. A structured discussion guide was used with all participants to ensure uniformity and coverage of all predetermined topics. Participants reported an increased likelihood of participation if they were informed about the study by their neurologist and not a government agency. All participants expressed willingness to provide a blood sample for genotyping but disagreed about the setting for the blood draw (at home or in a lab). Participants were concerned that they would not receive their individual genotyping results. The study protocol and materials were revised based on comments from the focus group participants. Formative research is an under-utilized resource for researchers conducting epidemiologic studies. Even with limited resources, piloting study materials with individuals similar to the proposed study population can provide opportunities to make modifications to effectively meet the needs of participants and promote participation and retention.