ECE2022 Poster Presentations Pituitary and Neuroendocrinology (127 abstracts)
Time from first symptoms to diagnosis in patients with pituitary adenomas
Cecilia Follin 1 , Christina Dahlgren 2 , Caroline Alkebro 3 , Pia Burman 4 , Per Dahlqvist 5 , Charlotte Höybye 6 , Margareta Lindgren 5 , Oskar Ragnarsson 7 , Helena Wik 8 , Maria Wärn 9 , Anna-Karin Åkerman 10 , Britt Eden Engström 11 , Bertil Ekman 12 & Maria Forsgren 13,14
1Department of Oncology, Skåne University Hospital, Lund, Sweden; 2Department of Endocrinology, University Hospital, Linköping, Sweden; 3Department of Medicine, Örebro University Hospital, SE-701 85 Örebro, Sweden; 4Department of Endocrinology, Skånes University Hospital, University of Lund, SE-205 02 Malmö, Sweden; 5Department of Public Health and Clinical Medicine, Umeå University, SE-901 87 Umeå, Sweden; 6Department of Molecular Medicine and Surgery, Karolinska Institute and the Department of Endocrinology, Karolinska University Hospital, SE-171 76 Stockholm, Sweden; 7Department of Internal Medicine and Clinical Nutrition, Institute of Medicine at Sahlgrenska Academy, University of Gothenburg and The Department of Endocrinology, Sahlgrenska University Hospital, SE-413 45 Gothenburg, Sweden; 8Department of Endocrinology, Sahlgrenska University Hospital, SE-413 45 Gothenburg, Sweden; 9Department of Endocrinology, Karolinska University Hospital, SE-171 76 Stockholm, Sweden; 10Department of Medicine, Örebro University Hospital, SE-701 85 Örebro, Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Örebro, Sweden; 11Department of Medical Sciences, Endocrinology and Mineral Metabolism, Uppsala University and Department of Endocrinology and Diabetes, Uppsala University Hospital, SE-751 85, Uppsala, Sweden; 12Department of Endocrinology in Linköping, Department of Internal Medicine in Norrköping, and Department of Health, Medicine and Caring Sciences, Linköping University, SE581 83, Linköping, Sweden; 13Department of Endocrinology and Diabetes, Uppsala University Hospital, SE-751 85, Uppsala, Sweden; 14Regional Cancer Centre Stockholm, Gotland, Stockholm, Sweden
Background: Subtle symptoms such as fatigue, weight gain and depression are commonly present for years in patients with pituitary adenoma (PA) before the diagnosis is made. A delayed diagnosis with risk of increased morbidity and mortality may be due to differences between patient-reported symptoms and symptoms reported in the patient’s medical record.
Aim: To estimate diagnostic delay and investigate the concordance between patient-reported symptoms and the medical record documentation in patients with PA.
Method: Patients with PA attending seven University Hospitals in Sweden participated. Age at first symptoms, age at diagnosis, experience of first symptoms, symptoms at diagnosis, and first healthcare contact were collected from the medical records, the Swedish Pituitary Register and patient questionnaires. The concordance between patient reports and medical record documentation was assessed using kappa statistics.
Results: 657 patients (322 women) were included (non-functioning PA (NFPA) n=314, prolactinoma n=118, acromegaly n=164, Cushing’s Disease (CD) n=58. Median age at inclusion was 61 yrs (19-92) for men and 52 yrs (18-91) for women. A significant difference in duration of onset of symptoms to final diagnosis between men and woman was reported; median 1 yr (0-31) for men and 2 yrs (0-44) for women (P<0.001). Patients with acromegaly had the longest diagnostic delay; median 4 yrs (0-32), significantly longer than for NFPA; median 1 yr (0-20), (P<0.001). Among NFPA the most frequent patient-reported symptoms were headache, visual deficit and tiredness; for prolactinomas menstrual irregularities, headache, tiredness; for acromegaly change in appearance, snoring, headache and for CD weight gain, tiredness and weakness. Substantial agreement between patient report and medical record was found in visual deficit in NFPA and prolactinomas (Cohen’s kappa >0.6) and in menstrual irregularities in prolactinomas (Cohen’s kappa>0.7). In prolactinomas we found poor agreement for galactorrhea, and in acromegaly for weakness and tiredness. In CD we found no agreement at all in weakness and dizziness. The first healthcare contact was endocrinologists for NFPA and general practitioners for prolactinomas, acromegaly and CD.
Conclusion: We report a substantial and highly variable diagnostic delay in patients with PA, most pronounced in women. Visual deficit and menstrual irregularities showed substantial agreement between the endocrinologists’ documentation and patient reported data, whereas weakness, tiredness and dizziness showed poor agreement. The most frequent entry to diagnosis was general practitioners. An increased awareness of symptoms from pituitary adenomas through increased information to the general population and directed education of health professionals may contribute to earlier diagnosis.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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