Information needs of men on androgen deprivation therapy

Abstract

5 0 3What ' 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 satisfi ed 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 fi ndings in randomized trails. A key area to enhance patient education appears to be side effects, especially around hot fl ashes 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-fi ve men were recruited, of whom 91.8% were receiving a gonadotrophinreleasing 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 benefi t 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 fl ushes 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 satisfi ed 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 fl ushes and fatigue. [ 3 ] . There has been a substantial increase in the use of ADT across all cancer stages and grades in the last two decades [ 4 ] . More and more, ADT is being used in the adjuvant setting with curative treatment, or in the setting of biochemical relapse after potentially curative treatment [ 5 ] . KEYWORDSHowever, despite the long history of ADT as a treatment for prostate cancer, coupled with its increased use, not much is known about patients ' information needs associated with taking ADT or understanding how ADT works as a treatment. Addressing information defi cits for men on ADT would improve their ability to seek appropriate medical care and may increase patient ...

National survey addressing the information needs of primary care physicians: Side effect management of patients on androgen deprivation therapy

“…This is notable, as our previous work demonstrated that patients generally tolerated ADT well, but had unexpected difficulties coping with functional side effects, such as hot flashes and fatigue. 9 This is further supported by a recent study from the Netherlands that showed that men with prostate cancer presented to their PCPs with adverse drug effects almost twice as often as controls. 18 These patients presented with soeyonggo et al…”

“…While our study demonstrated that PCPs are aware of the low incidence of life-threatening side effects (i.e., diabetes, deep vein thrombosis and cardiovascular events), patients have a poor understanding of these outcomes. 9 Walker and colleagues found that patients who were not informed about ADT-associated side effects by their physicians did not engage in behaviours to prevent or reduce the risk of adverse effects. 19 Moreover, Lebret and colleagues recently demonstrated that 57% of the men on ADT who received an educational toolkit started implementing changes in their overall lifestyle.…”

“…These outcome measures were chosen based on feedback from the focus group of expert clinicians, as some represent the most medically serious side effects, whereas others were chosen based on the results of a previous survey study that had examined common ADT side effects reported by patients. 9 Based on a list of 15 ADT side effects, PCPs were asked to rank the 3 most significant ADT side effects and the 3 most commonly reported ADT side effects by their patients. 10 Using a Likert scale, participants rated their knowledge and comfort level in counselling patients regarding ADT side effects; they also indicated the frequency of these patient discussions.…”

“…[4][5][6][7][8] Other side effects, such as weight gain, hot flashes, fatigue, erectile dysfunction, and gynecomastia, are commonly reported by patients. 5,9 Given the prevalence of prostate cancer and ADT use, it would be expected that PCPs would have many of their patients on ADT. There is little information on PCPs' experience with monitoring and managing ADT side effects.…”

Patient Preference and the Impact of Decision-Making Aids on Prostate Cancer Treatment Choices and Post-Intervention Regret

“…Furthermore in a survey of men over 50 years of age who had undergone prostate cancer screening, although respondents recalled discussing screening and feeling informed about the rationale, fewer than half could accurately answer one knowledge question about screening 10 . A similar lack of knowledge about treatment side effects has been documented for patients with advanced disease commencing androgen deprivation therapy 13,14 .…”