Abstract
PurposeCancer-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.MethodsThis 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.ResultsTwenty-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.ConclusionAchieving 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 registrationAustralian New Zealand Clinical Trials Registry ACTRN12619001649101
Highlights
Cancer-related cognitive impairment (CRCI) is a distressing and disabling treatment side effect reported by people undergoing treatment [1,2,3,4,5,6]
Recruitment rate Three patients/month Consent rate: number consented from number eligible Thirty of 33 (91%, 95% CI: 76 to 97%) estimated using the Wilson method Reasons for declining participation Overwhelmed by potential impact on fertility Diagnosis too rushed Overwhelmed by diagnosis Sex Male Age
This study provides insights regarding motivation and reasons for sustained participation in a study of CRCI, at a time of heightened stress related to a new diagnosis of aggressive lymphoma and the rapid commencement of treatment
Summary
Cancer-related cognitive impairment (CRCI) is a distressing and disabling treatment side effect reported by people undergoing treatment [1,2,3,4,5,6]. Recruitment and retention of participants to longitudinal clinical trials are challenging [7,8,9], and attrition is often attributed to poor study design [9, 10]. In a review of 18 supportive care oncology trials including 1214 patients, attrition. Recommendations to minimise the dropout rate include keeping the study as short as possible, minimising burden on participants and incorporating close monitoring and support for participants [10]. Research has shown that retention in studies exploring CRCI is challenging [13, 14] with attrition rates in longitudinal cohort studies of cognition in breast
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