Establishing a valid cohort of patients with acromegaly by combining the National Patient Register with the Swedish Pituitary Register.

J Robèrt, E Tsatsaris, K Berinder, L Bonelli, P Burman, P Dahlqvist, C Höybye, D S Olsson, O Ragnarsson, K Vouzouneraki, A-K Åkerman, B Ekman, B Edén Engström

Journal: Journal of endocrinological investigation 2024;47(4):995-1003

PMID: 37851314

Free Full Text on PubMed Central View on PubMed

Abstract

PURPOSE

The aim of this study was to establish a valid national cohort of patients diagnosed with acromegaly by combining data from the general National Patient Register (NPR) and the disease-specific Swedish Pituitary Register (SPR).

METHODS

Patients ≥ 18 years of age at diagnosis of acromegaly reported from 1991 to 2018 who were registered in the NPR and/or SPR were included. The diagnosis of acromegaly was considered correct for patients identified in both registers or confirmed through chart review. Medical records were reviewed in two of Sweden´s six health care regions if the patient was reported only in the NPR. An algorithm for the NPR, with criteria requiring multiple diagnosis registrations and tumour and/or surgery codes, was constructed to reduce the number of patients to review in the remaining four regions.

RESULTS

A total of 1866 patients were identified. Among these, 938 were reported in both registers. After application of the algorithm and chart review, the diagnosis was confirmed for 83 of the 906 patients found only in the NPR. Among 22 patients only registered in the SPR, a review of medical records confirmed acromegaly in 13. This resulted in a total of 1034 cases with acromegaly during the study period. The incidence rate of acromegaly in Sweden 1991-2018 was calculated to 4.0/million/year in the entire population and 5.1/million/year among subjects ≥ 18 years of age.

CONCLUSION

The combination of the SPR and NPR established a valid cohort of patients diagnosed with acromegaly and increased the estimated incidence in Sweden.

Address: Departments of Endocrinology in Linköping and Norrköping, Linköping University, Linköping, Sweden.; Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.; Department of Medical Sciences, Endocrinology and Mineral Metabolism, Uppsala University Hospital, Uppsala University, Uppsala, Sweden.; Department of Endocrinology, Karolinska University Hospital, Stockholm, Sweden.; Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden.; Department of Endocrinology, Skåne University Hospital Malmö, Lund University, Malmö, Sweden.; Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.; Department of Endocrinology, Sahlgrenska University Hospital, Göteborg, Sweden.; Department of Internal Medicine and Clinical Nutrition, Institute of Medicine at Sahlgrenska Academy, University of Gothenburg, Göteborg, Sweden.; Cardiovascular, Renal and Metabolism (CVRM), BioPharmaceuticals R&D, AstraZeneca, Gothenburg, Sweden.; Department of Endocrinology, Sahlgrenska University Hospital, Göteborg, Sweden.; Department of Internal Medicine and Clinical Nutrition, Institute of Medicine at Sahlgrenska Academy, University of Gothenburg, Göteborg, Sweden.; Wallenberg Center for Molecular and Translational Medicine, University of Gothenburg, Göteborg, Sweden.; Department of Internal Medicine, Örebro University Hospital, Örebro, Sweden.; Faculty of Health and Medical Sciences, Örebro University, Örebro, Sweden.; Departments of Endocrinology in Linköping and Norrköping, Linköping University, Linköping, Sweden. [email protected].; Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden. [email protected].

DOI: 10.1007/s40618-023-02217-x

Link outs

Free resources

Full Text Sources:

Subscription / membership required

Full Text Sources:

https://link.springer.com/article/10.1007/s40618-0...

MeSH Terms: Humans, Sweden, Acromegaly, Registries, Medical Records, Incidence