The National Swedish Lymphoma Register – a systematic validation of data quality
(2024) In Acta Oncologica 63. p.563-572- 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... (More)
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.
(Less)
- author
- organization
- publishing date
- 2024
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- coverage, exact agreement, Lymphoma, timeliness, validation
- in
- Acta Oncologica
- volume
- 63
- pages
- 10 pages
- publisher
- Taylor & Francis
- external identifiers
-
- scopus:85198479514
- pmid:38988133
- ISSN
- 0284-186X
- DOI
- 10.2340/1651-226X.2024.40431
- language
- English
- LU publication?
- yes
- id
- 8dad90ea-2155-465d-999b-edd5dc43b3a2
- date added to LUP
- 2024-09-23 16:13:59
- date last changed
- 2024-09-23 16:14:13
@article{8dad90ea-2155-465d-999b-edd5dc43b3a2,
abstract = {{<p>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.</p>}},
author = {{Smedby, Karin E. and Eloranta, Sandra and Wästerlid, Tove and Falini, Victor and Jerlström, Urban and Ellin, Fredrik and Papworth, Karin and Westerberg, Johanna and Lewerin, Catharina and Andersson, Per Ola and Kristjansdottir, Hallgerdur Lind and Brandefors, Lena and Mörth, Charlott and Hallén, Karin and Kuric, Nevzeta and Sabaa, Amal Abu and Wahlin, Björn E. and Molin, Daniel and Enblad, Gunilla and Hörstedt, Ann Sofi and Jerkeman, Mats and Glimelius, Ingrid}},
issn = {{0284-186X}},
keywords = {{coverage; exact agreement; Lymphoma; timeliness; validation}},
language = {{eng}},
pages = {{563--572}},
publisher = {{Taylor & Francis}},
series = {{Acta Oncologica}},
title = {{The National Swedish Lymphoma Register – a systematic validation of data quality}},
url = {{http://dx.doi.org/10.2340/1651-226X.2024.40431}},
doi = {{10.2340/1651-226X.2024.40431}},
volume = {{63}},
year = {{2024}},
}