Evaluation of data quality in the Swedish National Penile Cancer Register

The National Penile Cancer Register (NPECR) in Sweden was initiated in year 2000 and currently contains more than 3,900 men diagnosed with penile cancer. The aim of this study was to evaluate data quality in the NPECR in terms of completeness, timeliness, comparability, and validity.

Completeness was assessed by cross-linkage to the Swedish Cancer Register. Timeliness, defined as time from date of diagnosis to date of reporting in the NPECR, was calculated. Comparability was evaluated by reviewing and comparing coding routines in the NPECR with national and international guidelines. To assess validity, medical records of 375 men with a penile cancer diagnosis in the NPECR between 2017 and 2020 were reviewed and selected variables were re-abstracted and compared with previously registered data.

Completeness was high (93%). Timeliness was in median 4.6 (Inter Quartile Range 2.6-8.8) months. Comparability was good with coding routines and the registration forms were in compliance with current guidelines. Overall, the validity was high. The majority of variables showed an exact agreement exceeding 90%.

Data quality in the Swedish NPECR is generally high with respect to completeness, timeliness, comparability, and validity. Hence, the NPECR represents a reliable data source for monitoring the quality of penile cancer care and research. Data quality can be further improved by revision of reporting forms and manuals, training of reporting staff, and by organizational adjustments.