Pituitary disease - perspectives of patients and partners

Dunning, Trisha and Alford, Frank 2009, Pituitary disease - perspectives of patients and partners, Journal of nursing and healthcare of chronic illness, vol. 1, no. 2, pp. 139-146, doi: 10.1111/j.1752-9824.2009.01014.x.

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Title Pituitary disease - perspectives of patients and partners
Author(s) Dunning, TrishaORCID iD for Dunning, Trisha orcid.org/0000-0002-0284-1706
Alford, Frank
Journal name Journal of nursing and healthcare of chronic illness
Volume number 1
Issue number 2
Start page 139
End page 146
Total pages 8
Publisher Wiley-Blackwell Publishing
Place of publication Oxford, England
Publication date 2009
ISSN 1752-9816
Keyword(s) partners
pituitary disease
Summary Aim. To explore experiences of pituitary disease of people with pituitary disease (PD) and their partners (PT).

Background. Pituitary disease encompasses a range of hormonal abnormalities that produce a variety of signs and symptoms depending on the underlying cause.

Design. A triangulated exploratory study.

Methods. The study was conducted in three phases: (a) non-participant monitoring of an Internet pituitary chat room over four months; (b) in-depth structured interviews with PD attending a pituitary outpatient clinic (n = 8) and PT (n = 6), (c) focus groups (n = 12). Data were collected in 2005.

Results. Four themes emerged from the discussion in each phase: 'need to be normal', 'emotional merry-go-round', 'damage to the self', and 'doctor ignorance'. Symptoms of pituitary disease were often mistaken for sinusitis, 'getting old before my time', hypochondria, stress, and 'something sinister changing the way I look'. Time to diagnosis varied from four weeks to 15 years. PD felt included in decision-making but partners relied on PD for information. Body image changes were significant making PD feel like a 'freak show for medical students' and the emotional distress persisted after treatment and 'cure'. The word 'tumour' caused significant stress and anxiety and depression was common. PD and PT felt general practitioners (GP) lacked information about pituitary disease.

Conclusions. Pituitary disease has a major impact on psychological well-being. PD but not PT felt involved in decisions about their management. GPs may need more education about pituitary disease. The study adds important information about the emotional effects of pituitary disease and its treatment.

Relevance to clinical practice. Pituitary disease is a generic term encompassing a range of underlying disease processes that often produce vague symptoms, often attributed to other causes, which delays diagnosis and treatment. Pituitary disease has a significant under recognised impact on people's mental and physical wellbeing and self-concept. Although the underlying hormonal imbalances associated with pituitary disease are largely reversible (cured), emotional distress persists. Regular monitoring of emotional wellbeing as well as medical and hormone status is warranted.
Language eng
DOI 10.1111/j.1752-9824.2009.01014.x
Field of Research 110306 Endocrinology
Socio Economic Objective 970111 Expanding Knowledge in the Medical and Health Sciences
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2009, Blackwell Publishing
Persistent URL http://hdl.handle.net/10536/DRO/DU:30020111

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