Searchable abstracts of presentations at key conferences in endocrinology
Endocrine Abstracts (2014) 35 S4.3 | DOI: 10.1530/endoabs.35.S4.3

ECE2014 Symposia Endocrine Nurses Session 1: Craniopharyngioma (3 abstracts)

Psychological aspects of living with a pituitary related condition

Sue Jackson


Univesity of Surrey, Guildford, UK.


There is estimated to be 60 000 people with pituitary disease in the UK. Reports have identified a number of concerns and unmet psychological needs in this patient population. Many patients with pituitary disorders remain isolated, alienated, and distressed. Research has suggested that patient distress may not be identified by healthcare professionals (HCPs), resulting in significant morbidity, additional use of primary and secondary care services, and patient dissatisfaction with care.

As an example, craniopharyngioma is associated with obesity; such a change in appearance can be difficult to accept in a society where the cultural ideal is for thin bodies and thus may be associated with the development of body image problems or self-esteem issues. In addition, the diagnosis of a tumour may be associated with traumatic stress that, if unidentified and appropriately addressed, can cause problems with treatment adherence. Patients may feel disempowered from raising such concerns with HCPs, feeling that only symptoms related to the physical disease or its medical management are issues worthy of discussion at clinic appointments. While HCPs who provide care consistent with the biomedical model may unwittingly reinforce this message.

The work to develop a pituitary distress thermometer (PDT) and instruction manual may help in providing a method to both identify and support patients’ psychosocial issues. Routinely used in oncology services, a distress thermometer is a structured way for a patient, working with an HCP, to identify, discuss and resolve key concerns be they practical, emotional, physical, and/or psychological. Early results from a small scale pilot study indicate that both patients and HCPs like the PDT and find it easy to use. Crucially, completing the PDT prior to a clinic appointment was felt to help prompt patients to discuss their concerns with HCPs, including problems not conventionally viewed as ‘medical’.

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