Patient-reported outcomes in a pituitary tumor center of excellence (PTCOE)–aligned pituitary clinic compared with general endocrinology care

Abstract

Purpose: Pituitary Tumor Centers of Excellence (PTCOE) were developed to standardize multidisciplinary care for pituitary disorders; however, their impact on patient-reported outcomes remains insufficiently characterized. This study aimed to compare health-related quality of life, illness perception, and outpatient satisfaction between patients followed in a PTCOE-aligned, though not formally accredited, specialized pituitary clinic and those managed in general endocrinology clinics, and to identify organizational factors associated with these outcomes. Methods: In this cross-sectional study, 175 adults with prolactinoma (n = 70), non-functioning pituitary adenoma (n = 54), acromegaly (n = 35) and Cushing’s disease (n = 16) were evaluated across two tertiary endocrinology centers. Patient-reported outcomes were assessed using validated Turkish versions of the SF-36, Illness Perception Scale, and Outpatient Satisfaction Scale. Results: Certain baseline clinical profiles differed significantly between the two groups, with patients in the specialized clinic exhibiting higher rates of pituitary surgery (63.9% vs. 32.1%, p = 0.001) and hypopituitarism (28.9% vs. 14.1%, p = 0.02). Patients in the specialized clinic showed significantly lower SF-36 Role Physical, Role Emotional, Social Functioning, and Bodily Pain scores (all p ≤ 0.03). Illness-perception patterns also diverged, with higher Timeline, Consequences, and Treatment Control scores in the specialized clinic. Outpatient satisfaction, however, was consistently higher across all subscales in the specialized clinic (all p ≤ 0.006). In multivariable analyses, clinic type, sex, hypopituitarism, surgical history, and follow-up duration independently contributed to variation in multiple patient-reported outcome domains. Conclusion: PTCOE-aligned specialized care was associated with more favorable illness representations and higher patient satisfaction, even among cases with greater disease burden. This underscores the need for integrating patient-reported outcomes into the evaluation and refinement of pituitary care models.