Exploration of motivation to participate in a study of cancer-related cognitive impairment among patients with newly diagnosed aggressive lymphoma: a qualitative sub-study

Purpose Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This qualitative sub-study was undertaken as part of a larger prospective longitudinal study in which recruitment and retention were very high. The aim was to gain an understanding of participants reasons for ongoing participation, at a time of heightened stress related to a new diagnosis of aggressive lymphoma and the rapid commencement of treatment. Methods This qualitative descriptive sub-study included semi-structured interviews with twenty-seven participants. Interviews were recorded and transcribed, and a thematic descriptive approach was used to analyse the data. Results Twenty- seven interviews were completed. Four themes described participants' motivation to consent and continue with the study. These included ease of participation, personal values, self-help and valued additional support. Participants understood the requirements of the study, and data collection occurring during hospital visits was perceived to be convenient. Interviewees confirmed that the study fulfilled desire to help others. Although testing was intense and challenging, it provided feedback on current functioning and was described by some as a welcome distraction and enjoyable. Finally, interaction with the study nurse was perceived as an additional beneficial oversight and support. Conclusion Achieving sustained participation in a prospective study with patients undergoing treatment is facilitated where the logistical demands of data collection are minimised; a clinician from the service is included; the tasks are seen as inherently interesting; and care is taken to provide empathic support throughout.

Automated summary

This study found that participants' motivation to continue with the study was driven by factors such as ease of participation, personal values, self-help, and valued additional support. Participants were willing to help others and saw participation in the study as a way to receive feedback on their own functioning.