Introduction

Dopamine agonists (DA) are first-line treatment for prolactinomas and effectively control hyperprolactinemia in most patients. However, side effects may negatively impact health-related quality of life; and post-withdrawal remission rates are low, resulting in prolonged DA treatment.

Methods

Dutch multicenter prospective observational cohort study mapping standard care for 316 prolactinoma patients. Baseline clinical characteristics and treatment outcomes of 210 DA treated (DAT) patients are described (mean age 49.4±15.4 years; females N=122, 58.1%). 106 patients were not treated with DA at inclusion.

Results

Current prolactin levels -available for 155 patients- were elevated above the sex specific upper limit of normal in 54 (34.8%) patients, not different between males and females. Imaging data -available for 60 patients- showed 21 (35.0%) microprolactinomas, 23 (38.3%) macroprolactinomas, 1 (1.7%) giant prolactinoma, whereas in 10 (16.7%) patients no adenoma was visible, and 5 (8.3%) had a postoperative remnant. Males had more macroprolactinomas (15 (62.5%) vs 8 (22.2%), P<0.001). Galactorrhea was reported by 15/119 (12.6%) patients (males N=1/50 (2.0%) vs females N=14/69 (20.3%), P=0.004). Hypogonadism was reported by 42/153 (27.5%) patients, and subfertility by 10/118 (8.5%) patients, not different between males and females. DA side effects -measured using the PROCTCAE questionnaire (N=155)- were gastro-intestinal tract symptoms (e.g. diarrhea, constipation, nausea) in 63 (40.6%) patients (males N=14/68 (20.6%) vs females N=49/87 (56.3%) P<0.001). 77 (50.0%) patients reported fatigue (males N=22/68 (32.4%) vs females N=55/86 (64.0%) P<0.001). 41 (26.6%) patients reported concentration loss (not different between males and females).

Conclusions

In this Dutch national cohort of patients with prolactinomas, 210 DAT patients were identified. We describe baseline clinical characteristics and significant sex differences for most outcomes of interest, which need to be taken in to account when interpreting treatment outcomes of prolactinoma patients.