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. Pituitary Foundation (PF)).
Method: A survey, based on the 2008 PF Patient Satisfaction Questionnaire, was sent to 44 patients seen at a regional neurological centre. 19 completed questionnaires were returned; 63% from male, 37% from female respondents aged between 37 & 79 years (average 59 years).
Results: As in the 2008 PF survey, the overall picture was good, and areas of concern related to process of diagnosis, provision of some information, and issues related to ongoing medication. Secondary care healthcare professionals (HCPs) were consistently rated as being more helpful than primary HCPs. 33% of participants did not have enough written information about their condition; 44% wanted information on professional support services (e.g. counselling). Despite only 19% taking hydrocortisone having a steroid replacement card, 85% knew when to adjust their dose and 79% knew when to seek urgent medical attention.
Conclusions: As in the 2008 PF Survey, this local survey has highlighted some key areas to improve treatment satisfaction for pituitary patients. These include, provision of longer appointment times, identifying the endocrine nurse as a keyworker for patients, providing more information on patient support services and more patient information on pituitary conditions. The inclusion of pituitary updates on the GP education sessions at the hospital should help to improve diagnosis rates and the level of support pituitary patients receive from primary HCPs.
Declaration of interest: There is no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.
Funding: No specific grant from any funding agency in the public, commercial or not-for-profit sector.