The National Swedish Lymphoma Register - a systematic validation of data quality.

Autor:	Ekström Smedby K; Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Department of Hematology, Karolinska University Hospital, Stockholm, Sweden. Karin.Ekstrom.smedby@ki.se., Eloranta S; Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden., Wästerlid T; Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Department of Hematology, Karolinska University Hospital, Stockholm, Sweden., Falini V; Regional Cancer Center South, Lund, Sweden., Jerlström U; Department of Oncology, Örebro University Hospital, Örebro, Sweden., Ellin F; Department of Internal Medicine, Kalmar Hospital, Kalmar, Sweden; Department of Clinical Sciences, Lund University, Lund, Sweden., Papworth K; Department of Oncology, Umeå University Hospital, Umeå, Sweden., Westerberg J; Department of Hematology, Linköping University Hospital, Linköping, Sweden., Lewerin C; Section of Hematology and Coagulation, Sahlgrenska University Hospital; Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, Gothenburg, Sweden., Andersson PO; Section of Hematology and Coagulation, Sahlgrenska University Hospital; Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, Gothenburg, Sweden., Lind Kristjansdottir H; Section of Hematology and Coagulation, Sahlgrenska University Hospital; Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, Gothenburg, Sweden., Brandefors L; Department of Internal Medicine, Sunderbyn Hospital, Luleå, Sweden., Mörth C; Department of Oncology, Västerås Hospital, Västerås, Sweden., Hallén K; Department of Oncology, Karlstad Hospital, Karlstad, Sweden., Kuric N; Department of Internal Medicine, Halmstad Hospital, Halmstad, Sweden., Abu Sabaa A; Department of Oncology, Gävle Hospital, Gävle, Sweden., Wahlin BE; Department of Hematology, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine Huddinge, Karolinska Institutet, Stockholm, Sweden., Molin D; Department of Immunology, Genetics and Pathology, Cancer Immunotherapy, and Cancer Precision Medicine, Uppsala University, Uppsala, Sweden; Department of Oncology, Uppsala University Hospital, Uppsala, Sweden., Enblad G; Department of Immunology, Genetics and Pathology, Cancer Immunotherapy, and Cancer Precision Medicine, Uppsala University, Uppsala, Sweden; Department of Oncology, Uppsala University Hospital, Uppsala, Sweden., Hörstedt AS; Regional Cancer Center South, Lund, Sweden., Jerkeman M; Department of Clinical Sciences, Lund University, Lund, Sweden; Department of Oncology, Skåne University Hospital, Lund, Sweden., Glimelius I; Department of Immunology, Genetics and Pathology, Cancer Immunotherapy, and Cancer Precision Medicine, Uppsala University, Uppsala, Sweden; Department of Oncology, Uppsala University Hospital, Uppsala, Sweden.
Jazyk:	angličtina
Zdroj:	Acta oncologica (Stockholm, Sweden) [Acta Oncol] 2024 Jul 10; Vol. 63, pp. 563-572. Date of Electronic Publication: 2024 Jul 10.
DOI:	10.2340/1651-226X.2024.40431
Abstrakt:	Background and Purpose: The Swedish Lymphoma Register (SLR) was initiated in the year 2000 with the aim to monitor quality of care in diagnostics, treatment and outcome of all lymphomas diagnosed nationally among adults. Here, we present the first systematic validation of SLR records as a basis for improved register quality and patient care. Patients and Methods: We evaluated timeliness and completeness of register records among patients diagnosed with lymphoma in the SLR (n = 16,905) compared with the National Cancer Register for the period 2013-2020. Comparability was assessed through evaluation of coding routines against national and international guidelines. Accuracy of 42 variables was evaluated through re-abstraction of data from medical records among 600 randomly selected patients diagnosed in 2016-2017 and treated across all six Swedish healthcare regions.  Results: Completeness was high, >95% per year for the period 2013-2018, and >89% for 2019-2020 compared to the National Cancer Register. One in four patients was registered within 3 months, and 89.9% within 2 years of diagnosis. Registration instructions and coding procedures followed the prespecified guidelines. Missingness was generally low (<5%), but high for occasional variables, for example, those describing maintenance and consolidative treatment. Exact agreement of categorical variables was high overall (>80% for 24/34 variables), especially for treatment-related data (>80% for 17/19 variables). Interpretation: Completeness and accuracy are high in the SLR, while timeliness could be improved. Finetuning of variable registration guided by this validation can further improve reliability of register reports and advance service to lymphoma patients and health care in the future.
Databáze:	MEDLINE
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