Patient perceptions of pituitary incidentaloma diagnosis and follow-up: a Pituitary Society international patient survey
Authors' conclusion
Results 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.
Study context
- Population
- Patients with pituitary incidentaloma, members of patient organisations (World Alliance of Pituitary Organizations, Australian Pituitary Foundation, Pituitary Foundation UK, Brazilian and Japanese groups); mostly from UK (31%), Australia (20%), Japan (18%), Brazil (15%)
- Participants
- 275 patients
- Outcome
- Patient perceptions of diagnosis, prognosis and follow-up
Methodological detailsinternational, electronic survey, mixed-methods analysis, English, Japanese and Portuguese versions
- International
- Electronic survey
- Mixed-methods analysis
- English, Japanese and Portuguese versions
Main finding
As reported in the abstract
- Learned of incidentaloma from a neurology or endocrinology specialist
- 44%
- Told they had a tumor
- 60%
- Told it was benign or noncancerous
- 38%
- Worried about treatment or long-term complications
- 58%
- Scared about having cancer or dying
- 26%
- Received little or no specific information on likely course over time
- 17%
Observational data: associations, not effects.
Further findings
Age distribution by survey language
- Respondents mostly aged 30-69 years; distribution differed between English-, Japanese- and Portuguese-language surveys
- P = 0.003
Original publication
Patient perceptions of pituitary incidentaloma diagnosis and follow-up: a Pituitary Society international patient survey. Pituitary. Published 1 December 2025. doi:10.
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