Hypothesis / aims of study
INTRODUCTION Long-term urinary incontinence (UI) is a common consequence of radical prostatectomy (RP) (1) that can have a serious adverse impact on men’s lives leading to isolation, depression (2) and, sometimes, decision regret (3). Men may be inadequately prepared for managing their indwelling catheter and for the incontinence that is common after its removal.
Following interviews with 35 men and together with a panel of nine public patient representatives, we developed a new Prostate Continence website which offers multi-media resources (product selector tool, patient interviews and product use videos, PDFs and illustrations) to help men to prepare for having a catheter after surgery and for short-term, and possibly long-term, UI. We report here a study to evaluate that website.
AIMS OF THE STUDY To evaluate the value and utility to men of a novel prostate continence website and to identify areas for further improvement:
• To determine, describe and evaluate men’s views about the website;
• To evaluate the comprehensiveness of the website and identify any gaps;
• To test the functionality of the website (on a PC) i.e. ease of navigation through the site and new functions e.g. suppliers’ database;
• To identify further opportunities to improve the information and functionality required.
Study design, materials and methods
A mixed method study using:
• Self- completion questionnaires designed for the study and partially derived from the validated Judge questionnaire about health information-seeking;
• Semi-structured interviews about the content and utility of the website, its comprehensiveness, ease of use and areas for further improvement;
We observed the men navigating the website which we recorded using Echo 360 personal capture software.
Sample: Up to 16 men with current or recent experience of incontinence post RP who were not involved in the development of the website. Recruitment was through prostate cancer support groups and urology outpatient clinics.
Questionnaire data (quantitative): Descriptive statistics.
Interview data (qualitative): Transcripts of the audio recordings from the observations and thematic analysis from the semi-structured interviews.
Twelve men (3 x 40-59yrs; 8 x 60-7yrs; 1x non-responder) were recruited of whom nine had UI daily (n=3) or day and night (n=6) following either robotic (n=9) or laparoscopic (n=3) RP (mean length of time since onset 28 months). Subsequent to their RP, three men had also received an artificial urinary sphincter (AUS) to treat their UI. All those currently incontinent, including one man with an AUS, regularly used pads as their main method of containment. Although all were regular internet users for emails, shopping and information-seeking, there was a wide range of skill demonstrated when moving around the website.
Participants’ views about the website
All men found the website to be very helpful (11/12) or quite helpful (1/12) and all of them would recommend the website to others. Detailed responses in Figure 1.
Example quotes illustrating typical views are shown in Figure 2.
Men agreed that having the website available to them prior to their surgery would have been helpful. Having the comprehensive information in one place and in a user friendly format would have helped allay fears about what to expect after surgery:
“Forewarned is forearmed and the information contained takes away some of the fear and allows you to think about relevant questions you might need to ask. It helps you to deal with your situation more easily and confidently”
“Prepares them removing the unknown and knowing the questions to ask of the professionals.''
Men were asked how the website might have helped them to prepare for post-operative recovery, catheter care and post-surgical incontinence. They were also asked about specific aspects of the website.
Interpretation of results
The evaluation has highlighted strengths and weaknesses of this website which was co-produced with men and provided data that validated the user content. The evaluation also describes some weaknesses that could be rectified. Of particular value were the ‘real life’ stories and videos which were perceived as indicating that they were ‘not the only ones’. Interestingly some men emphasised the need for information ‘at the right time’ – that might not always be just before surgery when they are often focussing on their cancer diagnosis. All men felt it would have been helpful to have had access to the website before their surgery. A study limitation is our presence while the men reviewed the website which may have influenced their responses.
The Prostate Continence website (www.prostatecontinence.org) is part of the Continence Product Advisor (www.continenceproductadvisor.org) which has >4000 worldwide visitors weekly. Both websites are global resources to which health care professionals (HCP) and men have free access. Improvements to the website relate to ensuring that excess text is removed and sections link correctly. Evaluation of the website for product selection in primary care is currently taking place.