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Hidden disability: a study of the psychosocial impact of living with pituitary conditions

09 June 2022
19 min read
Volume 31 · Issue 11



Pituitary patients often experience psychosocial symptoms associated with their condition.


To explore the condition management experiences of pituitary patients and their psychosocial symptoms and to explore the impact of these on quality of life.


A sample of 748 individuals aged 18 to more than 65 years) completed a questionnaire relating to quality of life and the psychosocial impact of pituitary conditions.


Analysis of the qualitative sections using content analysis identified four themes: social isolation, emotional and behavioural issues, appearance distress and physical and cognitive effects including fatigue and pain. An overarching theme of hidden disability emerged.


The study identified multiple biopsychosocial factors that impact quality of life, with symptoms not visible to others most likely to impact negatively. Nurses are well placed to provide support and information to patients about the possible psychosocial impact of pituitary conditions to enable positive adjustment.

Pituitary gland disorders comprise a range of rare health conditions that affect an estimated 50 000-70 000 patients (approximately 1% of the population) in the UK (Pituitary Foundation, 2014). Pituitary conditions affect hormonal control within the body. These include acromegaly (overproduction of growth hormone), adult growth hormone deficiency (under production of growth hormone), Cushing's disease (overproduction of adrenocorticotropic hormone), diabetes insipidus (underproduction of vasopressin) and hypopituitarism (general underproduction of pituitary hormones).

The medical management of pituitary conditions is notoriously difficult, and individuals frequently experience high levels of distress often not addressed by health professionals despite National Institute for Health and Care Excellence (NICE) guidance stating that distress must be assessed at key points within the patient-care pathway for central nervous system (CNS) tumours (which includes pituitary adenomas) (Levy, 2004; Osbourne et al, 2006; NICE, 2006). The diagnostic process can require multiple tests and scans, ideally undertaken in specialist endocrine centres (Wass and Owen, 2014). For prolactinoma, the commonest of the pituitary conditions (Fernandez et al, 2010), medication is used to shrink the tumour and reduce prolactin levels, while patients with other pituitary conditions are likely to require surgery and radiotherapy in addition to medication (Wass and Owen, 2014). Post-surgery, medication may be required to replace or optimise hormone levels, although getting this right can be frustrating for all concerned, with some patients still feeling unwell despite post-treatment blood results showing hormone levels within the normal range (Rio, 2013). Post-treatment, patients require an annual review in a specialist endocrine centre.

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