Searchable abstracts of presentations at key conferences in endocrinology
Endocrine Abstracts (2022) 81 RC4.5 | DOI: 10.1530/endoabs.81.RC4.5

1Department of Medical Sciences, Endocrinology and Mineral Metabolism, Uppsala University, Department of Endocrinology and Diabetes, Uppsala University Hospital, Uppsala, Sweden; 2Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden; 3Department of Molecular Medicine and Surgery, Karolinska Institutet, Department of Endocrinology, Karolinska University Hospital, Stockholm, Sweden; 4Department of Endocrinology, Skåne University Hospital Malmö, University of Lund, Malmö, Sweden; 5Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden; 6Institute of Medicine at Sahlgrenska Academy, University of Gothenburg, Department of Internal Medicine and Clinical Nutrition, Gothenburg, Sweden; 7Department of Internal Medicine, Örebro University Hospital, Örebro, Sweden; *Erika Tsataris and Jonas Robèrt are joint first authors


Purpose: We aimed to validate the diagnosis and estimated national incidence of acromegaly reported in the Swedish National Patient Register (NPR), based on clinically reported International Classification of Diseases (ICD-codes), in comparison with the Swedish Pituitary Register (SPR).

Methods: All patients in NPR or SPR between 1991-2018 with the ICD-9 or ICD-10 diagnosis of acromegaly and age >18 years at diagnosis were included. The diagnosis was assumed correct if found in both registers. Medical records were reviewed in two of Sweden’s six healthcare regions in patients only found in one of the registers. An algorithm aiming to correctly identify most patients with acromegaly in the NPR was constructed from validated data and applied to the remaining four health care regions. The algorithm was based on at least two registrations in the NPR of diagnostic codes E220 or 253A or the diagnostic code alone in combinations with codes for pituitary tumour and/or pituitary surgery, giving the highest functional diagnosis sensitivity and high positive predictive value (PPV).

Results: A total of 1868 patients were found, 938 reported in both registers and 930 patients only in one register (908 only in the NPR and 22 only in the SPR). Internal validation of the algorithm was performed in the SPR and captured 98.9% (928 of 938) of the patients. All 22 patients only reported in the SPR were validated, and 14 patients were confirmed with acromegaly. Applying the diagnostic algorithm to the NPR-search reduced the number of patients only found in NPR to 347, of which 85 have confirmed acromegaly after review of medical records. Thus, 1023 of the total 1846 patients with acromegaly codes in the NPR were confirmed to have acromegaly (PPV 55.4%). The most common reasons for misclassification were acromegaly initially suspected but later ruled out, hyperprolactinemia/prolactinoma, non-functioning pituitary adenoma, other/unknown pituitary tumours or cysts. Among the 1037 confirmed cases, 952 patients were already in the SPR, which gave a coverage rate of 91.8%. Based on this validation, the annual incidence of acromegaly in Sweden during 1991-2018 was calculated to 5.1 per million.

Conclusion: By using the diagnostic code for acromegaly alone to identify patients with the disease in NPR is not sufficiently specific for epidemiological research. However, the usage of an algorithm including combinations of diagnostic, tumour and surgical codes increased the probability of correct diagnosis and provided an improved estimate of the incidence of acromegaly in Sweden.

Volume 81

European Congress of Endocrinology 2022

Milan, Italy
21 May 2022 - 24 May 2022

European Society of Endocrinology 

Browse other volumes

Article tools

My recent searches

No recent searches.