Factors Influencing Patient Choice of Bladder Reconstruction Following Radical Cystectomy

Aims and Objectives. The proposed research aims: firstly, to enhance our understanding of patient concerns, lifestyles, and values, that influence their choice of bladder reconstruction and predict their treatment satisfaction and quality of life (QoL); and, secondly, to initiate the development a novel decision-aid tool to help bladder-cancer patients, their families, and medical/health professionals to choose the reconstructive surgery following bladder removal that best suits a patient's needs. To these ends, a complementary combination of qualitative and quantitative research approaches will be employed to obtain information from patients about the reasons for their reconstructive surgery choices, the aspects of their lifestyle that were most important to them in reaching their decisions, and the degree to which they are satisfied with their reconstruction. These findings will be used to inform the items to be contained in a pilot joint decision-making tool to support patients and medical professionals when planning such life-changing surgery. Such a tool ultimately could support patient choice, enhance QoL, and influence decision-making practice. Thus, the specific objectives of the research will be to: (1) identify the factors important for patients when choosing a bladder reconstruction; (2) establish the degree to which these factors predict satisfaction with the reconstruction; and, ultimately, (3) start to develop a joint decision-aid tool for patients and medical staff, to use when deciding on the choice of diversionary procedure, that highlights these key factors predicting success and better QoL following different forms of bladder reconstruction.

Methodology and Project Plan. Participants Participants will be recruited from Health Board databases of those who have had advanced bladder cancer (grade pT1 and above) and undergone either IC or NB procedures within the last five years. Around 40 patients per year are referred to the ABMU; this is in line with expectations, given the size of the ABMU patient population (600,000) and rates of bladder cancer, giving a potential sample of 200 patients over the previous five years. This will provide an adequate population from which to sample participants. No form of payment will be offered for participation, but participants will be reimbursed for travel expenses. There will be no other inclusion or exclusion criteria in order to access a wide range of patients with potentially different values and lifestyles, and to aid in the recruitment of adequate sample sizes.

Qualitative Study Forty participants (equal numbers with each surgical procedure) will be randomly selected from the patient databases and invited for interview. This number is achievable given the size of the database, and exceeds the usual criteria (12-18; Guest et al., 2006) for saturation in qualitative research, even with expectation of some non-participation.

The participants will be interviewed by a Researcher and a Clinical Nurse Specialist in a quiet room in the Clinical Research Unit of the Hospital. A semi-structured interview format will be adopted to allow participants latitude in expressing issues that are important to them, and without forcing particular issues. The same semi-structured interview script will be used for each participant, ensuring all are asked the same questions. The general themes to be asked about will be: Who patients consulted and discussed options with; What types of information, support, and advice were they offered; What were the attributes or aspects of the NB/IC that influenced their choice; Which aspects of their lifestyle were most important in making a decision; What factors could have been considered that were not; What types of help have they been offered since; Could they have been offered other information at the time; How do they feel their choice influences their life today; Are they satisfied with their decision. These questions will allow a wide range of patient needs, values, and experiences to be elicited.

Transcribed interview recordings will be subjected to thematic content analysis, in line with previous recommendations (Vaughn et al., 1996), and accepted procedures in health contexts (Osborne et al., 2012a; 2012b; Osborne & Reed, 2008). Transcripts will be examined independently by two Researchers to identify key themes and ensure reliability. Individual 'units of information' contained within each transcript will be highlighted (a 'unit' is any piece of text that relates to an identified theme, and that can be interpreted on its own to provide a meaningful and informative comment). From reading the unitised comments, the initial themes will be refined, so that all 'units of information' can be categorised according to those themes. Coding of 'units' into themes will be conducted independently by two Researchers, and Cohen's Kappa will be used to establish reliability.