BACKGROUND: Eliciting information directly from the patient is particularly important in oncology due to the symptoms, impacts and toxicities associated with the disease and treatment. When integrated into oncology clinical care, rigorously developed clinical outcome assessments (COAs) can improve outcomes and ensure the patient voice is heard. However, working with patients with advanced cancer or undergoing end of life care requires careful consideration.
AIM: To discuss special considerations required when using traditional methods for conducting qualitative research in oncology, in a sensitive and appropriate manner, while maximising data retrieval.
CONSIDERATIONS: When designing qualitative research studies in oncology, a number of factors should be considered, including; situational risk assessment (e.g. understanding the participants diagnosis, prognosis and treatment history), access to a support network (e.g. ensuring the patient/caregiver has sufficient emotional support following the interview) and appropriate safeguarding procedures (i.e. clear safeguarding process in place for researchers to follow if necessary).
TECHNIQUES: Practical adaptations to research (e.g. interview length, location of interview, presence of another person for support) can help to make oncology patients/caregivers feel more comfortable and encourage spontaneous discussion. Clear pre- and post-interview guidance for researchers can help to ensure that high-risk participants (e.g. patients with terminal illness) are identified early in the research and appropriate risk assessment strategies are implemented. Post-interview follow up can be pursued on an ad-hoc basis if the researcher deems it necessary. Clear safeguarding procedures can protect both participant and researcher.
CONCLUSION: Developing and validating oncology specific COAs is fundamental to fully capturing the patient experience in oncology. Special consideration of the sensitivities specific to this patient population help to ensure the rigorous development of oncology specific COAs while ensuring participants (and researchers) are appropriately supported. These considerations also mean researchers are adequately equipped with the knowledge and resources to conduct the research in an ethical, supportive manner.
