Assessing self-help issues for patients with prostate cancer, interstitial cystitis, erectile dysfunction and urinary diversion.

OBJECTIVE: To determine the prevalence of self-help (which is widely available and can assist clinicians to educate and empower patients) for several urological diseases. PATIENTS AND METHODS: Using a structured interview, the prevalence of self-help use and awareness was assessed in patients with prostate cancer, interstitial cystitis, erectile dysfunction and urinary diversion. Patients were also asked to report levels of support and information they required and to specify how well these needs were being met. Consecutive patients (120, 30 from each group) were recruited from an outpatient urology clinic in a tertiary-care health centre.
RESULTS: Patients with interstitial cystitis and erectile dysfunction reported having the greatest need but were least satisfied with the level of support and information they currently receive. Inversely, patients with prostate cancer reported having the least need and were most satisfied. Excluding brochures, the use and awareness of self-help were low in all groups but most patients claimed they would use many types of self-help if they were available. Many patients are not directed to self-help resources by their urologist or family physician.
CONCLUSION: Most patients would like to use more self-help but many do not. The low percentage of patients referred to self-help by their physician probably contributes to, or causes, this problem. It is important for clinicians to encourage and refer patients to specific resources to ensure that the patient receives accurate and pertinent information. As most patients read brochures it is logical to use them to provide basic information and to direct them to other more sophisticated forms of self-help. We have used urology patients as a model but consider that many of our findings could be applied to other medical and surgical specialties.