Research agenda for life-threatening cancer

Area of Science:

• Oncology
• Patient-Centered Care
• Health Services Research

Background:

• Patients with life-threatening cancers, their relatives, and clinical specialists face unique challenges and uncertainties.
• Existing research agendas may not fully capture the evolving needs and concerns of all stakeholders throughout the cancer trajectory.

Purpose of the Study:

• To identify future research agendas reflecting the concerns and unexplored interests of patients with life-threatening cancer, their relatives, and clinical specialists.
• To ensure research priorities align with the lived experiences and needs of individuals navigating the cancer journey.

Main Methods:

• Six focus group discussions were conducted with patients, relatives, and clinical specialists for primary malignant brain tumors and acute leukemia.
• Focus group interviews (FGIs) were video/audio-recorded, transcribed, and thematically analyzed.
• A literature review was performed to validate and strengthen the identified research topics and agendas.

Main Results:

• New research agendas and specific questions were formulated for high-grade glioma brain tumors and acute leukemia.
• Identified research areas include supportive care/palliation, education/information, rehabilitation, complementary/alternative therapy, and healthcare organization.
• The study generated actionable research topics directly from the perspectives of cancer patients, their families, and healthcare providers.

Conclusions:

• Involving users in research agenda identification can significantly improve the quality of care for cancer patients and their caregivers.
• This collaborative approach helps minimize the disparity between healthcare user needs and provider-driven research.
• User-centered research agendas are crucial for advancing cancer care and addressing critical gaps in knowledge and support.