Collecting patients' views and perceptions of continence services: the development of research instruments

This paper describes one part of a feasibility study carried out in England which examined the costs, quality and effectiveness of continence services in areas with different approaches to provision. It involved the design of instruments to collect the views and perceptions of patients and an investigation of ways to develop a methodology to implement comparative studies. It is the design and piloting of the questionnaires and the way patients responded that forms the focus of this paper. The main sample group recruited for the study were women who had recently sought formal help with urinary incontinence and were likely to receive conservative treatment or management in the community. They were interviewed and asked to complete four questionnaires at two points in time. A smaller sub-group of disabled women, interviewed only once, were included to compare cost profiles for different client groups. The questionnaires which were developed address the impact of urinary incontinence (using a standard scale), the effectiveness of service provision in terms of patients' clinical history, expectations and hoped-for outcomes, service receipt and its cost, and patients' satisfaction with several aspects of service provision. In total 118 women were interviewed, including 28 disabled women. The study generated a set of survey instruments which might be used for a variety of purposes including audit and future research and which could inform purchaser and provider decisions by using patients' perspectives of quality of life outcomes to enhance service development.