Endocrine Abstracts (2009) 20 P601

From the horse's mouth: recommendations to improve care for pituitary patients. Results from a survey on pituitary patients' satisfaction with information and support from healthcare professionals

Sue Jackson1, Marianne Morris1, Jane Murray1 & Tony Woods2

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

Introduction: Pituitary conditions are rare and diagnosis may be slow because symptoms are ambiguous. The treatment may be a combination of surgery, radiotherapy and medication so patients see many healthcare professionals (HCPs). This survey sought to assess patient satisfaction with the information and support they receive from GPs, endocrinologists, neurosurgeons, radiotherapists, specialist nurses, and other agencies (e.g. the pituitary foundation).

Method: A questionnaire based upon the 2006 cancer backup survey was sent to 1000 members of the pituitary foundation. Of 488 questionnaires were returned with 429 containing enough responses to be included in the subsequent analyses. Of these 40% were from male and 60% from female respondents aged between 10 and 85 years (average 56 years).

Results: Overall the picture was reasonably good, but the areas of concern related to the process of diagnosis, and issues related to ongoing medication. There were also some concerns in relation to provision of information to individuals with a pituitary condition and the extent to which they are involved in regular treatment reviews; and the fact that a significant number (53%) did not know where to get information on possible treatments for their condition. Most individuals surveyed (96%) liked to take and maintain control of managing their condition and enthusiastically sought information to do so, preferably in a face-to-face interaction.

Conclusions: Individuals with a pituitary condition need support to learn the skills to help them manage their condition to the best of their ability, enabling them to enjoy an improved quality of life. To this end, mechanisms should be in place to enable individuals to have regular treatment reviews in partnership with their HCPs. HCPs should be encouraged and enabled to offer more information to patients in a 1:1 setting.

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