The National Swedish Lymphoma Register – a systematic validation of data quality

Authors

  • Karin Ekström Smedby Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Department of Hematology, Karolinska University Hospital, Stockholm, Sweden
  • Sandra Eloranta Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
  • Tove Wästerlid Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Department of Hematology, Karolinska University Hospital, Stockholm, Sweden
  • Victor Falini Regional Cancer Center South, Lund, Sweden
  • Urban Jerlström Department of Oncology, Örebro University Hospital, Örebro, Sweden
  • Fredrik Ellin Department of Internal Medicine, Kalmar Hospital, Kalmar, Sweden; Department of Clinical Sciences, Lund University, Lund, Sweden
  • Karin Papworth Department of Oncology, Umeå University Hospital, Umeå, Sweden
  • Johanna Westerberg Department of Hematology, Linköping University Hospital, Linköping, Sweden
  • Catharina Lewerin Section of Hematology and Coagulation, Sahlgrenska University Hospital; Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, Gothenburg, Sweden
  • Per-Ola Andersson Section of Hematology and Coagulation, Sahlgrenska University Hospital; Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, Gothenburg, Sweden
  • Hallgerdur Lind Kristjansdottir Section of Hematology and Coagulation, Sahlgrenska University Hospital; Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, Gothenburg, Sweden
  • Lena Brandefors Department of Internal Medicine, Sunderbyn Hospital, Luleå, Sweden
  • Charlott Mörth Department of Oncology, Västerås Hospital, Västerås, Sweden
  • Karin Hallén Department of Oncology, Karlstad Hospital, Karlstad, Sweden
  • Nevzeta Kuric Department of Internal Medicine, Halmstad Hospital, Halmstad, Sweden
  • Amal Abu Sabaa Department of Oncology, Gävle Hospital, Gävle, Sweden
  • Björn E. Wahlin Department of Hematology, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine Huddinge, Karolinska Institutet, Stockholm, Sweden
  • Daniel Molin Department of Immunology, Genetics and Pathology, Cancer Immunotherapy, and Cancer Precision Medicine, Uppsala University, Uppsala, Sweden; Department of Oncology, Uppsala University Hospital, Uppsala, Sweden
  • Gunilla Enblad Department of Immunology, Genetics and Pathology, Cancer Immunotherapy, and Cancer Precision Medicine, Uppsala University, Uppsala, Sweden; Department of Oncology, Uppsala University Hospital, Uppsala, Sweden
  • Ann-Sofi Hörstedt Regional Cancer Center South, Lund, Sweden
  • Mats Jerkeman Department of Clinical Sciences, Lund University, Lund, Sweden; Department of Oncology, Skåne University Hospital, Lund, Sweden
  • Ingrid Glimelius Department of Immunology, Genetics and Pathology, Cancer Immunotherapy, and Cancer Precision Medicine, Uppsala University, Uppsala, Sweden; Department of Oncology, Uppsala University Hospital, Uppsala, Sweden

DOI:

https://doi.org/10.2340/1651-226X.2024.40431

Keywords:

Lymphoma, validation, coverage, timeliness, exact agreement

Abstract

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. 

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2024-07-10

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Ekström Smedby, K., Eloranta, S., Wästerlid, T., Falini, V., Jerlström, U., Ellin, F., Papworth, K., Westerberg, J., Lewerin, C., Andersson, P.-O., Lind Kristjansdottir, H. ., Brandefors, L., Mörth, C., Hallén, K., Kuric, N., Abu Sabaa, A., Wahlin, B. E., Molin, D., Enblad, G., Hörstedt, A.-S., Jerkeman, M., & Glimelius, I. (2024). The National Swedish Lymphoma Register – a systematic validation of data quality. Acta Oncologica, 63(1), 563–572. https://doi.org/10.2340/1651-226X.2024.40431

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Vol. 63 (2024): Acta Oncologica

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Copyright (c) 2023 Karin Ekström Smedby, Sandra Eloranta, Tove Wästerlid, Victor Falini, Urban Jerlström, Fredrik Ellin, Karin Papworth, Johanna Westerberg, Catharina Lewerin, Per-Ola Andersson, Hallgerdur Lind Kristjansdottir, Lena Brandefors, Charlott Mörth, Karin Hallén, Nevzeta Kuric, Amal Abu Sabaa, Björn E. Wahlin, Daniel Molin, Gunilla Enblad, Ann-Sofi Hörstedt, Mats Jerkeman, Ingrid Glimelius

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