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peer-reviewed A diagnosis of cancer and its subsequent treatment can have a significant impact on an person’s mental wellbeing. The way patients perceive and cope with their illness can help to understand emotional distress. Using the Self -Regulation Model of Common Sense Illness Representations (SRM) as a theoretical framework, this thesis aimed to 1) examine the ability of illness perceptions and coping to predict psychological distress in non-muscle invasive bladder cancer (NMIBC) patients’ on surveillance and 2) achieve insight into the lived experiences of NMIBC. A mixed-methods research design was utilised which assessed illness perceptions, coping and psychological distress in (N = 84) participants. Semi-structured interviews were carried out with a subset (N = 10) of the sample. All interviews were recorded and transcribed verbatim. Hierarchical regression analyses revealed that illness perceptions and avoidant coping predicted 20.5% of the variance in depression and 54.7% in anxiety. Stronger perceptions of Timeline, Emotional Representations and avoidant coping were found to be the key predictors of emotional distress. Interview data were analysed using Interpretative Phenomenological Analysis (IPA) which generated three super-ordinate themes. These comprised of: Making Sense of NMIBC, The Dynamic Nature of Illness Perceptions and Coping. This is the first study to date that utilised the SRM to examine illness perceptions, coping and psychological distress in NMIBC patients on surveillance, and the first to include a qualitative component to examine the full SRM in the context of NMIBC. The quantitative and qualitative findings are integrated and presented in the context of the extant literature.

BACKGROUND: If research addresses the questions of relevance to patients and clinicians, decision-makers will be better equipped to design and deliver health services which meet their needs. To this end, a number of initiatives have engaged patients and clinicians in setting research agendas. This paper aimed to scope the research literature addressing such efforts. METHODS: A systematic search strategy combined electronic searches of bibliographic databases with handsearching and contacting key authors. Two researchers, initially working independently, described the relevant reports. FINDINGS: Over 250 studies addressed patients' or clinicians' priorities for research and outcomes for assessment. This literature described different routes for patients and clinicians to contribute to research agendas. Two-thirds of the studies addressing patients' or clinicians' research questions were applicable across health care, with the remainder focussed on specific health conditions. The 27 formal studies of patient involvement revealed a literature that has grown in the last decade. Although only nine studies engaged patients and clinicians in identifying research questions together, they show that methods have advanced over time, with all of them engaging participants directly and repeatedly in facilitated debate and most employing formal decision-making procedures. CONCLUSION: A sizeable literature is available to inform priorities for research and the methods for setting research agendas with patients and clinicians. We recommend that research funders and researchers draw on this literature to provide relevant research for health service decision-makers.