Attitudes, knowledge and barriers to participation in cancer clinical trials among rural and remote patients

Abstract

To assess the knowledge of randomized clinical trials and willingness and barriers to participation among rural, remote and regional cancer patients of North Queensland. A survey was conducted in medical oncology outpatient clinics at the Townsville and Mt Isa hospitals on patients, following their informed consent, using questionnaires. Rurality was defined according to the rural remote and metropolitan area classification. Of the 180 patients approached, 178 participated. The median distance to the regional trial center for rural participants was 180 km (range 80-1300 km). 45.4% lived in rural or remote areas and the rest lived in Townsville, a regional metropolitan center. Their overall knowledge was low, with a median knowledge score of 3 (inter-quartile ranges n=2.5). For randomized controlled trials there were no significant relationships between willingness to participate and rurality or education level (P=0.981). Cost of travel (41.1% rural or remote; 23.5% regional; P<0.001) and the need for family or friends to accompany them (38.9% rural or remote; 24.1% regional, P=0.021) were more important for rural/remote than regional patients as factors affecting participation. Rural and remote patients are as interested in participating in randomized clinical trials as regional patients. Their knowledge of trials is poor and education earlier in the consultations is needed. Since cost of travel and the need for family members to accompany them are important for rural patients trial budgets should include the cost of travel to encourage participation.