Information needs of men on androgen deprivation therapy.

UNLABELLED: Study Type - Needs assessment survey Level of Evidence 2b. What's known on the subject? and What does the study add? Although androgen deprivation therapy (ADT) is widely used to treat men with prostate cancer, little is known about the information needs of patients on ADT. We found that patients are generally very satisfied with using ADT and expressed minimal decisional regret with its use up to four years later. For men receiving ADT in the adjuvant setting, their survival estimates with the addition of ADT were quite reasonable when compared to findings in randomized trails. A key area to enhance patient education appears to be side effects, especially around hot flashes and fatigue, which were also the most bothersome treatment sequelae for patients.
OBJECTIVE: To evaluate information needs of men receiving androgen deprivation therapy (ADT). PATIENTS AND METHODS: A cross-sectional survey was distributed to English-speaking prostate cancer patients receiving ADT adjuvant to radical therapy or for biochemical relapse. Three cohorts were recruited based on duration of ADT use: <6 months (cohort 1), 6-18 months (cohort 2) and 18 months to 4 years (cohort 3). Several validated questionnaires were used, including the Control Preferences Scale (CPS), Satisfaction with Treatment Decision Scale (SWD) and Decisional Regret Scale (DRS). Patients on adjuvant ADT were asked to estimate their overall survival with and without ADT.
RESULTS: Eighty-five men were recruited, of whom 91.8% were receiving a gonadotrophin-releasing hormone agonist, 4.7% were receiving anti-androgen monotherapy and 3.5% were receiving combined androgen blockade. Patients preferred the following decision-making roles: 23.5% active, 50.6% collaborative, 27.0% passive. Mean patient satisfaction for ADT use was high at 24.0/30 and decisional regret was low at 7.9/25. There was a perceived overall survival benefit of 3.9-6.9% at 5 years, 3.6-17.8% at 10 years and 5.7-18.1% at 15 years with the addition of adjuvant ADT.   Hot flushes and fatigue were reported as the most common theoretical adverse effects as well as those experienced most commonly by patients.
CONCLUSIONS: Patients on ADT were generally satisfied with their decisions to start ADT and expressed minimal decisional regret up to 4 years later. A key area to enhance patient education appears to be adverse effects, especially around hot flushes and fatigue.