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

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posted on 2022-01-25, 04:18 authored by P Gates, H Dhillon, K Gough, Carlene WilsonCarlene Wilson, Eliza HawkesEliza Hawkes, L Scudder, T Cushion, M Krishnasamy
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. Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12619001649101


This study is supported by a non-restricted educational grant from Celgene Pty Ltd to support the costs associated with the neuroimaging. A PhD scholarship to the first author is provided by the Olivia Newton-John Cancer Wellness and Research Centre Supportive Care Research PhD scholarship through the Victorian Cancer Agency.


Publication Date



Supportive Care in Cancer






9 p. (p. 1331-1339)





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