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Patients with muscle invasive bladder cancer can be offered radical cystectomy or radiotherapy (with a radiosensitiser). It has not been possible to conduct a randomised controlled trial and, partly because of this, there is variability in practice despite NICE (UK) guidance to offer patients a choice between modalities. Qualitative work following the SPARE RCT which had to close early demonstrated a lack of equipoise for clinicians, relating to both cancer control and impact of treatment on quality of life. Even when patients are offered a choice decision-making can be challenging due to lack of comparative data to support information provision. The Q-ABC study programme incorporates both qualitative and quantitative evaluation of quality of life after treatment using a non-randomised comparative cohort approach, here we present results from the qualitative study, interviewing patients and carers, (Q-ABC-QIS ISRCTN13881914.)

Participants were patients who had received radical treatment (radiotherapy or cystectomy) between 1 and 2 years previously and people they identified as “supporting them through treatment” (carers). Patient participants did not need to identify a carer to be eligible to participate. Participants were recruited from 4 sites across the south of England including a specialist hospital, a teaching hospital and two district general hospitals. Individual semi-structured interviews were conducted and analysed qualitatively using a Framework approach.

20 patients and 14 carers were interviewed. Themes included adaptation to “the new normal” with acceptance of these changes in the context of parallel changes with age and “what the alternative is” – i.e. progressive cancer. Many participants, and particularly carers reported a feeling of “skating on thin ice” with anxiety about recurrence. Participants identified with a construct of “luck” despite the impact of treatment and this was often comparative to other patients they had been treated alongside. Cancer diagnosis and treatment had complex bi-directional effects on close relationships and significant impact on carers’ day to day lives.

After a recovery and adjustment period patients and carers are generally accepting of changes to their quality of life after radical treatment. Findings can be used to enhance current treatment information and patient support. Patient and carer priorities and approaches have informed the recently completed quantitative study. Together with the outcomes of the quantitative Q-ABC study a more robust understanding of the impacts of radical treatment of bladder cancer will be used to support interventions to standardise practice and ensure patients are supported in treatment decision making.