Endocrine Abstracts

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. 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 Cancerbackup Survey was sent to 1000 members of the Pituitary Foundation. 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 offered/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. GPs were rated lower than any other medical professional; 13% rated them as being unhelpful and 14% were dissatisfied or very dissatisfied with their GP’s attitude towards them.

Conclusions: GPs are often not familiar with pituitary symptoms and do not listen to patients who could, if treated as partners rather than ‘cases’, help diagnose their condition. When healthcare professionals were helpful and informative, patients experienced greater satisfaction and better quality of life. Most individuals surveyed liked to take and maintain control of managing their condition and enthusiastically seek information to do so. Survey participants appreciated the Pituitary Foundation as a major source of information and support.