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 ( kappa >0.6) and for menstrual irregularities in prolactinomas ( 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.