The Dutch Prolactinoma Cohort Studies: Cross-sectional Analysis of Females Focusing on the Patient's Perspective.

PURPOSE: To assess the results of patient-reported outcome measures (PROMs) in a national cohort of females with a prolactinoma by disease activity.

METHODS

Females with prolactinoma included in the PRolaCT or ProlaC study were assessed cross-sectionally, comparing patients with active (prolactin above upper limit of normal (ULN)) and controlled (prolactin<ULN) disease. Disease and treatment characteristics were reported. Patients completed PROMs on symptoms (modified PRO-CTCAE), health-related quality of life (HR-QoL) (SF-36), anxiety and depressive symptoms (Hospital Anxiety and Depression Scale (HADS)), and disease burden (Leiden Bother and Needs Questionnaire for patients with Pituitary disease (LBNQ-Pituitary)).

RESULTS

Four hundred and fifty females with a prolactinoma were included (active: n=223, controlled: n=227), most were treated with dopamine agonists (DAs) (97.0%). Fatigue was the most prevalent symptom in both patients with active and controlled disease (92.6%, and 86.4%, respectively) followed by concentration problems (79.0%, and 64.5%, respectively) (modified PRO-CTCAE, LBNQ-Pituitary). Anxiety and depressive symptoms were worse in patients with active compared to controlled disease (HADS-Anxiety: 8.0 ± 4.5 vs 6.4 ± 4.5 p<0.001. HADS-Depression: 6.4 ± 5.0 vs 4.7 ± 4.4 p<0.001). Disease burden was higher in patients with active compared to controlled disease (LBNQ-Pituitary: Total Bother 24.4 ± 22.9 vs 16.4 ± 17.9 (p<0.001).

CONCLUSIONS

Females with a prolactinoma were most affected by fatigue and cognitive complaints. Although patients with active disease perceived more burden than patients with controlled disease, symptoms including fatigue, psychological and cognitive complaints were prevalent despite disease control. Therefore, improvement of treatment and rehabilitation strategies is needed.