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-sect...

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Main Authors: Cecilia Follin, Oskar Ragnarsson, Maria Forsgren, Christina Dahlgren, Caroline Alkebro, Pia Burman, Per Dahlqvist, Charlotte Höbye, Margareta Lindgren, Helena Wik, Maria Wärn, Anna-Karin Åkerman, Britt Eden Engström, Bertil Ekman
Format: Article
Language:English
Published: BMJ Publishing Group 2025-06-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/15/6/e097804.full
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Summary: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.
ISSN:2044-6055