Objectives: The aim of this study was to identify future research agendas that reflect the concerns and unexplored areas of interest for patients with life-threatening cancer, their relatives and the clinical specialists during the cancer trajectory.
Methods: Six focus group discussions were conducted addressing two different cancer trajectories: primary malignant brain tumour and acute leukaemia. For each of the two cancer trajectories, separate FGIs were carried out with patients, relatives and clinical specialists to identify important concerns, challenges and uncertainties. The FGIs were video/audio-recorded, transcribed and thematically analysed within and across FGI groups to construct research topics. Finally, the literature was reviewed for existing evidence concerning the identified research topic(s) to strengthen the suggested research agendas.
Results: New research agendas related to high-grade glioma brain tumour and acute leukaemia with corresponding research questions were formulated within the topics of supportive care/palliation, education/information, rehabilitation, complementary and alternative therapy and organization of health care.
Conclusion: User involvement in identifying research agendas has the potential to improve quality of care for patients and caregivers across the cancer trajectory, while minimizing the gap in research between the healthcare user and healthcare provider.
Keywords: brain tumours; leukaemia; patient education; patient involvement; quality of life; research agenda.
© 2018 John Wiley & Sons Ltd.