Patients' and carers' priorities for cancer research in Aotearoa/New Zealand

Abstract

Background Discrepancies have been reported between what is being researched, and what patients/ families deem important to be investigated. Our aim was to understand research priorities for those who live with cancer in Aotearoa/New Zealand, with emphasis on Maori. Methods Adult outpatients with cancer and their whanau/family completed a survey (demographics, selecting keywords, free-text comments) at Christchurch hospital. Quantitative and qualitative data were evaluated using standard statistical and thematic analyses, respectively. Results We recruited 205 participants, including both turoro/patients (n = 129) and their whanau/ family/carer (n = 76). Partnership with Maori health workers enabled greater recruitment of Maori participants (19%), compared to the proportion of Maori in Canterbury (9%). Cancer research was seen as a priority by 96% of participants. Priorities were similar between Maori and non-Maori participants, with the keywords 'Cancer screening', 'Quality of Life' and 'Development of new drugs' chosen most often. Free-text analysis identified three themes; 'Genetics and Prevention', 'Early Detection and Treatment', and 'Service Delivery', with some differences by ethnicity. Conclusions Cancer research is a high priority for those living with cancer. In addition, participants want researchers to listen to their immediate and practical needs. These findings may inform future cancer research in Aotearoa.