Endocrine Abstracts (2017) 50 P282 | DOI: 10.1530/endoabs.50.P282

Understanding the psychosocial needs of pituitary patients: a survey of Pituitary Foundation members

Hannah Forrest1, Alyson Norman1, Sue Jackson2 & Pat McBride3


1University of Plymouth, Plymouth, UK; 2University of the West of England, Bristol, UK; 3Pituitary Foundation, Bristol, UK.


Background: Management of pituitary conditions is notoriously difficult and patients often experience high levels of distress which are often not addressed by health professionals. As a result, pituitary conditions have been found to have a large negative impact on quality of life. The aims of this study were 1) to identify the psychosocial symptoms associated with pituitary conditions, and 2) to identify any differences in symptomatology across different pituitary conditions, age ranges and gender.

Methods: A questionnaire was completed by 1062 members of the Pituitary Foundation (683 female, aged under 18 to over 65). With a format based on the Cancerbackup Survey (2006), the questionnaire was designed using material from the Pituitary Foundation Needs Analysis report (2006) and some relevant questions from other validated questionnaires. Respondents completed either a pen and paper or Survey Monkey version.

Results: Physical and psychosocial issues were identified, including mood swings, fatigue, anxiety and depression. The results identified significant variation in symptoms across gender, age range and condition type, particularly in relation to infertility and headaches, difficulties with sex life, appearance and pain management. E.g. headaches were associated with women, younger patients and those with prolactinoma, diabetes insipidus, acromegaly or hypogonadism. Difficulties with sex life were associated with men, younger patients, and those with craniopharyngioma or prolactinoma.

Conclusions: Participants were found to be experiencing a range of debilitating psychosocial and physical symptoms that were impairing long term functioning. These symptoms need further support in terms of patient information, advice and condition management.

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