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

Karin Ekström Smedby ¹, Sandra Eloranta ², Tove Wästerlid ³

¹Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Department of Hematology, Karolinska University Hospital, Stockholm, Sweden. Karin.Ekstrom.smedby@ki.se.
²Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden.
³Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Department of Hematology, Karolinska University Hospital, Stockholm, Sweden.
⁴Regional Cancer Center South, Lund, Sweden.
⁵Department of Oncology, Örebro University Hospital, Örebro, Sweden.
⁶Department of Internal Medicine, Kalmar Hospital, Kalmar, Sweden; Department of Clinical Sciences, Lund University, Lund, Sweden.
⁷Department of Oncology, Umeå University Hospital, Umeå, Sweden.
⁸Department of Hematology, Linköping University Hospital, Linköping, Sweden.
⁹Section of Hematology and Coagulation, Sahlgrenska University Hospital; Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, Gothenburg, Sweden.
¹⁰Department of Internal Medicine, Sunderbyn Hospital, Luleå, Sweden.
¹¹Department of Oncology, Västerås Hospital, Västerås, Sweden.
¹²Department of Oncology, Karlstad Hospital, Karlstad, Sweden.
¹³Department of Internal Medicine, Halmstad Hospital, Halmstad, Sweden.
¹⁴Department of Oncology, Gävle Hospital, Gävle, Sweden.
¹⁵Department of Hematology, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine Huddinge, Karolinska Institutet, Stockholm, Sweden.
¹⁶Department of Immunology, Genetics and Pathology, Cancer Immunotherapy, and Cancer Precision Medicine, Uppsala University, Uppsala, Sweden; Department of Oncology, Uppsala University Hospital, Uppsala, Sweden.
¹⁷Department of Clinical Sciences, Lund University, Lund, Sweden; Department of Oncology, Skåne University Hospital, Lund, Sweden.

⁰Division of Clinical Epidemiology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Department of Hematology, Karolinska University Hospital, Stockholm, Sweden. Karin.Ekstrom.smedby@ki.se.

Acta Oncologica +

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July 11, 2024

View abstract on PubMed

Summary

The Swedish Lymphoma Register (SLR) shows high completeness and accuracy for lymphoma patient data. Improving registration timeliness can further enhance its reliability for patient care.

Area Of Science

Oncology
Public Health
Health Informatics

Background

The Swedish Lymphoma Register (SLR) was established in 2000 to monitor the quality of care for adult lymphoma patients.
This study presents the first systematic validation of SLR data quality.

Purpose Of The Study

To validate the completeness, timeliness, and accuracy of the Swedish Lymphoma Register (SLR) data.
To identify areas for improvement in register quality and enhance patient care for lymphomas.

Main Methods

Compared SLR records (n=16,905) with the National Cancer Register (2013-2020) for timeliness and completeness.
Assessed coding routines against national/international guidelines.
Evaluated accuracy of 42 variables via re-abstraction from medical records of 600 randomly selected patients.

Main Results

SLR demonstrated high completeness (>95% for 2013-2018, >89% for 2019-2020) compared to the National Cancer Register.
89.9% of patients were registered within 2 years; 25% within 3 months.
High accuracy for most variables (>80% agreement), particularly treatment-related data; some variables showed higher missingness.

Conclusions

The Swedish Lymphoma Register (SLR) exhibits high data completeness and accuracy.
Timeliness of patient registration requires improvement.
Refining variable registration based on this validation will enhance SLR reliability and lymphoma patient care.