This study assesses the needs and preferences of men with prostate cancer regarding receiving customized information about their Health-Related Quality of Life (HRQOL) via the Web.

Methods

PORPUS.org is being designed through an iterative process with expert heuristic evaluations, user evaluations and user testing.

A prototype Website was designed in accordance with the principles of user-centred design. Heuristic evaluations were completed through collaboration of experts in Human Factors, Urology, Psychology and Patient Education.

The Website uses the Patient-Oriented Prostate Utility Scale (PORPUS), a validated and sensitive instrument, to assess users' HRQOL and provides them with feedback customized according to their questionnaire responses.

A preliminary round of semi-structured interviews was conducted with 20 prostate cancer patients. Mixed methods were used to elicit evaluations of the prototype and to identify further user needs.

Results

Overall, participants had positive responses to the prototype. Participants indicated that the prototype Website was easy to use and that they would visit a site such as this on their own. Participants who volunteered information about their HRQOL problems in the interview showed greater interest in the site than those who did not volunteer such information.

The Cancer Behavior Inventory v2.0, a validated instrument, was used to assess coping efficacy. However, results showed ceiling effects, indicating that this instrument may not be suitable for use with this population.

After interacting with the prototype, participants showed a statistically significant greater perceived need to seek further information outside of clinical interviews (95% CI 0.079-1.802, n=17). When asked to compare paper prototypes representing different types of information that might satisfy these needs, participants indicated that information customized according to users' HRQOL scores is more likely to satisfy their information needs than general information.

Conclusions

Prostate cancer patients are interested in learning about their HRQOL via the Web. This is especially true of patients who are bothered by one or more aspects of their HRQOL. Using a Website to provide them with real-time assessments of their HRQOL leads to increased interest in further information. In order to satisfy these information needs, customized information about steps than can be taken to improve their HRQOL is preferable to general information.