Patient perceptions of pituitary incidentaloma diagnosis and follow-up: a Pituitary Society international patient survey.

purposeDetection of pituitary incidentalomas is increasing in frequency with the use of advanced imaging techniques. As an adjunct to publication of consensus guidelines on management of pituitary incidentalomas, the Pituitary Society sought to understand patient perceptions of their diagnosis, prognosis, and follow-up.

methodsAn electronic survey developed in English and translated into Japanese and Portuguese was sent to the World Alliance of Pituitary Organizations, Australian Pituitary Foundation, Pituitary Foundation UK, Associação Brasileira Addisoniana, Instituto Vidas Raras, and Pituitary Patient Advocacy Group Japan. These organizations subsequently disseminated the survey to their patient members. Survey responses were analyzed using a mixed-methods approach to capture qualitative and quantitative data.

results275 patients responded to the survey, primarily from the United Kingdom (31%), Australia (20%), Japan (18%), and Brazil (15%). Respondents were mostly aged 30-69 years, although distribution differed significantly between the English-, Japanese-, and Portuguese-language surveys (p = 0.003). Only 44% of all respondents reported learning of the incidentaloma from a specialist in neurologic disorders or endocrinology. 60% were told they had a tumor and only 38% were told it was benign or noncancerous. 58% said they were worried about the treatment or long-term complications and 26% said they were scared about having cancer or about dying. 17% received little or no specific information about what was likely to happen to the incidentaloma over time.

conclusionResults from this survey highlight gaps in physician-patient communication about pituitary incidentalomas. Our findings underscore the need for enhanced education to improve patient perceptions of their disease.