User evaluation of web-based information for men with incontinence after treatment for prostate cancer

Macaulay M1, Clarke-O'Neill S1, Cottenden A2, Fader M1

Research Type

Clinical

Abstract Category

Continence Care Products / Devices / Technologies

Abstract 19
E-Technologies and Innovative Treatment
Scientific Podium Short Oral Session 3
Wednesday 29th August 2018
08:35 - 08:42
Hall C
Male Incontinence Rehabilitation
1. Faculty of Health Sciences, University of Southampton, UK, 2. Department of Medical physics & Bioengineering, University Coillege London, UK
Presenter
M

Mandy Fader

Links

Abstract

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.

Data analysis: 
Questionnaire data (quantitative): Descriptive statistics.
Interview data (qualitative): Transcripts of the audio recordings from the observations and thematic analysis from the semi-structured interviews.
Results
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

Questionnaire responses 
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.

Interviews 
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.
Concluding message
This evaluation demonstrates that the Prostate Continence website, produced in partnership with men, provides comprehensive product information that, combined with media resources, helps men to feel less isolated and more prepared to manage their catheter and urinary incontinence after RP. This resource may help HCPs provide support for men before and after surgery.
Figure 1
Figure 2
References
  1. Milsom I et al. Epidemiology of urinary incontinence (ui) and other lower urinary tract symptoms (luts), pelvic organ prolapse (pop) and anal (ai) incontinence in Incontinence 6th Edition 2017 Volume 1 Editors: P Abrams, L Cardozo, A Wagg, A Wein.
  2. Sharpley CF, Bitsika V, Christie DR. Understanding the causes of depression among prostate cancer patients: development of the effects of prostate cancer on lifestyle questionnaire Psycho-oncology. 2008 Jul
  3. Albkri A et al. Urinary incontinence, patient satisfaction, and descisional regret after prostate cancer treatment: A French national study. Urologia Internationalis. 2018; 100:50-56. DOI:10.1159/000484616.
Disclosures
Funding This work was funded by the Movember Foundation in partnership with Prostate Cancer UK as part of the TrueNTH programme Clinical Trial Yes Public Registry No RCT No Subjects Human Ethics Committee London Stanmore Research Ethics Committee Ref: 16/LO/2223 Helsinki Yes Informed Consent Yes