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

Karin E. 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 HörstedtMats Jerkeman, Ingrid Glimelius

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Pages (from-to)563-572
Number of pages10
JournalActa Oncologica
Volume63
DOIs
Publication statusPublished - 2024

Subject classification (UKÄ)

  • Cancer and Oncology

Free keywords

  • coverage
  • exact agreement
  • Lymphoma
  • timeliness
  • validation

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