Introduction

Current guidelines suggest dopamine agonists (DAs) are the golden standard of treatment of prolactinoma patients. Albeit effective for prolactin level normalization, tumor volume control, and restoration of gonadal function, DAs do not “cure” the vast majority of prolactinoma patients and may cause side effects. In the preparation of the proposal for the ZonMW prolactinoma study, a questionnaire was sent out to globally assess the patient’s perspective on perceived side effects and willingness to participate in future clinical research on best prolactinoma treatment, including the possibility of surgical removal.

Methods

A standardized questionnaire regarding forms of treatment, side effects, (dis)advantages of these forms of treatment and willingness to undergo surgery and to participate in clinical trials was created. The questionnaire was sent out by the National Pituitary Foundation to all members and in their social media canals.

Results

A total of 311 patients filled out the questionnaire. Following diagnosis, 265 patients (85.2%) were treated with medical therapy, 35 patients (11.3%) underwent surgery followed by medical therapy, whereas 6 patients (1.9%) were treated surgically. Side effects were reported by 216 patients (72.0%), of which 178 patients (82.4%) reported moderate or severe side effects. 184 patients (59.2%) reported to be willing to undergo surgery in the future and 231 patients (74.3%) reported a willingness to participate in future research projects.

Conclusions

Side effects of DAs were reported by the majority of patients that filled out this questionnaire. Moreover, this patient cohort was eager to participate in trials to evaluate and improve current clinical practice for prolactinomas. Further assessment in an unselected population, since this cohort is a specific subgroup of prolactinoma patients, as envisioned in the Prolac study, is necessary to explore patient’s perspective on prolactinoma treatment.