Estimating diagnostic delay in patients with pituitary adenomas in Sweden: a cross-sectional study.

Objective: A delayed diagnosis of pituitary adenomas (PAs) can lead to increased morbidity and reduced quality of life. The aim was to estimate diagnostic delay and investigate the concordance between patient-reported symptoms and the medical record documentation in patients with PA.

Design: Cross-sectional study.

Setting: Seven university hospitals.

Participants: 654 patients: non-functioning PA (NFPA, 314), prolactinoma (118), acromegaly (164) and Cushing's Disease (CD, 58).

Data collection: Questionnaires and medical record extraction.

Primary and secondary outcomes: Type of first healthcare contact, delay of PA diagnosis and patient-reported symptoms and symptoms documented in medical records.

Results: First healthcare contact was usually a general practitioner. Estimated time from symptoms to diagnosis varied from <1 year (66%), 1-5 years (12%), 5-9 years (13%) and >10 years (9%). The longest diagnostic delays were observed in acromegaly and CD. A longer delay was observed in women compared with men (p<0.001). The most frequent patient-reported symptoms among NFPA were headache and visual disturbances; for prolactinomas, menstrual irregularities and headache; for acromegaly, change in appearance and snoring; and for CD, weight gain and tiredness. Concordance between patient-reported symptoms at diagnosis and medical records was found for visual disturbances in NFPA and prolactinomas (Cohen's kappa >0.6) and for menstrual irregularities in prolactinomas (Cohen's kappa >0.7).

Conclusion: We report a large variation in symptom duration before diagnosis with a substantial diagnostic delay in patients with CD and acromegaly. An increased awareness about endocrine diseases in the general population and health professionals may contribute to earlier diagnosis of pituitary adenomas.