Patient-centred outcomes with pituitary and parasellar disease

Abstract

Over the last 2 decades advances in the diagnosis and management of pituitary diseases have made it possible to attain an endocrine 'cure' in a large proportion of patients. In other words, tumors can be excised or controlled with drugs, and mass effect of the lesion on surrounding structures be solved, and pituitary deficiencies can be substituted with all relevant hormones. While this is considered a satisfactory outcome for health care providers, patients often suffer from an aftermath of prior endocrine dysfunction exposure, with irreversible effects both physically and psychologically, which have a great impact on their everyday life. Diagnostic delay, often of several years, adds a negative impact on health perception. This affects their social, professional and family domains and determines their future life. Understanding that this may occur is important and health care providers should offer information to prepare the patient for this difficult journey, especially in the case of acromegaly, Cushing disease or hypopituitarism. In order to maintain in the long-term a good quality of life, patients need to adapt to this new situation, something that may be difficult, since they often cannot continue with all the activities and rhythm they used to do. Depression is often the consequence of maladaptation to the new situation, leading to impaired quality of life.