ECE2022 Poster Presentations Pituitary and Neuroendocrinology (127 abstracts)
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 patients 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, Cushings 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 (Cohens kappa >0.6) and in menstrual irregularities in prolactinomas (Cohens 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.
21 May 2022 - 24 May 2022