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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BMJ Publishing Group
2025-06-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/15/6/e097804.full |
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| author | 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 |
| author_facet | 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 |
| author_sort | Cecilia Follin |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-31d0803332dd4d95b1ebe04b570b37ff |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-31d0803332dd4d95b1ebe04b570b37ff2025-08-20T03:30:33ZengBMJ Publishing GroupBMJ Open2044-60552025-06-0115610.1136/bmjopen-2024-097804Estimating diagnostic delay in patients with pituitary adenomas in Sweden: a cross-sectional studyCecilia Follin0Oskar Ragnarsson1Maria Forsgren2Christina Dahlgren3Caroline Alkebro4Pia Burman5Per Dahlqvist6Charlotte Höbye7Margareta Lindgren8Helena Wik9Maria Wärn10Anna-Karin Åkerman11Britt Eden Engström12Bertil Ekman13Department of Health Sciences, Faculty of Medicine, Lund University, Lund, SwedenDepartment of Medicine, Sahlgrenska University Hospital, Gothenburg, SwedenDepartment of Medical Sciences; Endocrinology and Mineral Metabolism, Uppsala University Hospital, Uppsala, Stockholm, SwedenDepartment of Endocrinology, Medicine and Caring Sciences, Linköping University, Linköping, SwedenDepartment of Internal Medicine, Örebro University Hospital, Örebro, SwedenDepartment of Endocrinology, Skåne University Hospital, Malmö, Lund University, Malmo, SwedenDepartment of Public Health and Clinical Medicine, Umeå University, Umeå, SwedenDepartment of Molecular Medicine and Surgery, Karolinska Institute, Stockholm, SwedenDepartment of Public Health and Clinical Medicine, Umeå University, Umeå, SwedenDepartment of Internal Medicine and Clinical Nutrition, University of Gothenburg, Gothenburg, SwedenDepartment of Endocrinology, Karolinska University Hospital, Stockholm, SwedenDepartment of Internal Medicine, Örebro University Hospital, Örebro, SwedenDepartment of Medical Sciences; Endocrinology and Mineral Metabolism, Uppsala University Hospital, Uppsala, Stockholm, SwedenDepartment of Health, Medicine and Caring Sciences, Linköping University, Linköping, SwedenObjective 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.https://bmjopen.bmj.com/content/15/6/e097804.full |
| spellingShingle | 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 Estimating diagnostic delay in patients with pituitary adenomas in Sweden: a cross-sectional study BMJ Open |
| title | Estimating diagnostic delay in patients with pituitary adenomas in Sweden: a cross-sectional study |
| title_full | Estimating diagnostic delay in patients with pituitary adenomas in Sweden: a cross-sectional study |
| title_fullStr | Estimating diagnostic delay in patients with pituitary adenomas in Sweden: a cross-sectional study |
| title_full_unstemmed | Estimating diagnostic delay in patients with pituitary adenomas in Sweden: a cross-sectional study |
| title_short | Estimating diagnostic delay in patients with pituitary adenomas in Sweden: a cross-sectional study |
| title_sort | estimating diagnostic delay in patients with pituitary adenomas in sweden a cross sectional study |
| url | https://bmjopen.bmj.com/content/15/6/e097804.full |
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