Pituitary disorders are relatively uncommon conditions which leave patients feeling isolated and distressed. Acromegaly and Cushings are associated with obvious and visible differences to appearance, while other pituitary conditions are associated with profound, yet hidden, physical changes which impact significantly on psychological well being.
To explore the subjective experiences of patients living with and managing a pituitary condition and the impact this has on their quality of life.
n=28 elected for 4 focus group discussions held at 3 locations in the UK; in addition 8 one-to-one semi-structured interviews were conducted. The participants (83.3% females and 16.7% males; 1477 yrs; mean age: Focus group=43.63 yrs and Interviews =36.75 yrs) had a variety of hypo-pituitary conditions. All interviews were recorded and transcribed verbatim. Data were analysed using Inductive Thematic Analysis (Morgan 1997) involving a process of triangulation between three researchers.
Four major themes emerged from the data: Identity; Loss; Changed self; and Appearance with a number of related sub-themes: personality, relationships, stigma, and disclosure. These themes reflected a long and difficult journey from diagnosis to the present time; a profound sense of changed identity and an unsupported struggle through a complex management regimen. Taken together these reduce patients opportunities for adjusting to their new self and coming to accept their condition.
Findings highlighted a number of concerns and unmet psychosocial needs of pituitary patients. These concerns need to be acknowledged by the health care professionals involved with patient care to recognise the importance of providing psychological support to improve patients quality of life and psychological well being.
06 - 07 Nov 2006
Society for Endocrinology