Patient-reported measures in hypothalamic-pituitary diseases

Modern medicine centres its focus on the central stakeholder, the patient, to deliver a more patient-centred and holistic care and improve quality of care, emphasizing the importance of communication between healthcare providers and patients. To learn how the patient experiences and evaluates outcome of any health intervention, different tools have been developed, known as PREMs (Patient-Reported Experience Measures) and PROMs (Patient-Reported Outcome Measures). PREMs reflect the patient's personal experience when being cared for, like whether the professionals explained things clearly, or if they felt they were treated with dignity and are indicators of the care process, i.e., communication, access, environment, coordination, etc. and are used to improve service quality and patient-centredness. PROMs are linked to clinical outcomes and reflect the patient's feelings about their health and may include, among others, pain scales, mobility questionnaires or psychosocial inventories. They are used to assess the effectiveness of treatment, like before and after surgery and focus on symptoms, functioning, and health-related quality of life (HRQoL). This review summarizes available information on PREMs, PROMs and HRQoL in patients with hypothalamic-pituitary diseases, specifically, Cushing disease, acromegaly, prolactinoma, non-functioning pituitary adenoma, hypopituitarism (including adult growth hormone and arginine vasopressin deficiencies) and craniopharyngioma. On the whole, hormone dysfunction and mass control after medical or surgical treatment improves HRQoL, but it often remains worse than in healthy control population. Additionally, it is important to ask the patients what affects them most, since the identification and relevance of complaints and experiences are often different among pituitary patients and healthcare providers.