4.17 - Health-Related Quality of Life and Behavior in Patients with Both Pituitary and Hypothalamic Diseases

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Abstract

Pituitary and hypothalamic diseases determine physical and psychological problems, which are often still present even after treatment, and these residual impairments affect the patient's health-related quality of life (QoL). Chronic hormone excess or deficiency can have long-lasting effects on the central nervous system affecting personality, cognition, or behavior. In fact, cognitive dysfunction and psychopathology are common comorbidities of pituitary adenomas. This chapter focuses on six prevailing diseases: acromegaly, Cushing's disease, prolactinomas, nonfunctioning pituitary adenomas, hypopituitarism, and craniopharyngiomas. A complex treatment including a more extensive psychopathological and cognitive evaluation and therapy may be a way to improve QoL in patients with pituitary and hypothalamic diseases.

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Iris Crespo obtained a master's degree in psychology from the University of Granada, Spain, in 2008, and a postgraduate diploma in neuroscience and pain in 2009. Since 2010 she has been working as a research fellow in the Institut d'Investigació Biomèdica Sant Pau (IIB-Sant Pau), Barcelona (Spain), specifically in the unit of pituitary diseases, member of the CIBERER network of excellence on rare diseases (unit 747).

Over the last years, she has authored multiple original articles and reviews on her main areas of research interest, namely health-related quality of life, cognitive function, brain abnormalities, persistent comorbidities, and psychopathology in patients with pituitary adenomas, mainly Cushing's syndrome and acromegaly. Currently, she is finishing her PhD thesis devoted to “Neuropsychological evaluation of patients with acromegaly and Cushing's syndrome: long-term effects.”

Susan M. Webb was born and trained in Endocrinology in Barcelona, completed in London and the United States. She is a full professor of medicine of the Universitat Autonoma de Barcelona and leader of a research group on pituitary diseases, Unit 747 of CIBERER (Spanish network of excellence in Rare Diseases); she works at the IIB-Sant Pau/Dep Endocrinology of the Hospital Sant Pau.

Her research is mainly on Cushing's syndrome (CS), acromegaly, and pituitary diseases, on their long-term consequences (cardiovascular, osteoporosis, muscular atrophy, neuropsychological impairments, and reduced quality of life (QoL)). She is the coordinator of the European Register on Cushing's syndrome (ERCUSYN), which was initially funded by the European Commission Public Health Program (2007–10) and which includes 1200 patients, from over 50 partners in 28 countries.

She is Secretary of the ENEA of most endocrine journals. She has been President of the Spanish Endocrine Society, Secretary of ENEA, and currently member of the ExCo of the European Society of Endocrinology. She is coauthor and copyright owner of disease-generated questionnaires to evaluate QoL in CS, acromegaly, and primary hyperparathyroidism (AcroQoL, CushingQoL, and PHPQoL), extensively translated. She has been a member of EUCERD (European Commission of Experts on Rare Diseases) and authored over 200 papers, mostly related to pituitary and other rare endocrine diseases.

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