Capture rate and representativity of The National Prostate Cancer Register of Sweden

Background. Capture rate and representativity of quality registers need to be assessed in order to ensure that register data are generalizable. Material and methods. In 1998-2009, 103 047 men had been diagnosed with prostate cancer and registered in the Swedish Cancer Register to which registration is mandated by law and of these men, 100 849 men (98%) had also been registered in The National Prostate Cancer Register (NPCR) of Sweden. We compared demographics, cancer treatment, comorbidity, and mortality in men in NPCR, with those who had only been registered in the Cancer Register, by use of data from the Cause of Death Register, the In-Patient Register and the Prescribed Drug Register. In addition, we identified 1929 men who had prostate cancer as underlying cause of death in the Cause of Death Register who had neither been registered in the Cancer Register nor in NPCR. Results. Compared to men in NPCR, men only registered in the Cancer Register were slightly older, median age 72 versus 71 years, and a lower proportion underwent radical prostatectomy, 15% versus 27%. Ten year prostate cancer mortality was 23% (95% CI 20-25) for men in the Cancer Register only and 24% (95% CI 24-25) in NPCR, while mortality from competing causes was 28% (95% CI 26-31) and 30% (95% CI 30-30), respectively. Men identified with prostate cancer by a death certificate were old and had high comorbidity. Conclusion. The capture rate of NPCR is very high and there are only modest differences in demographics, cancer treatment, comorbidity, and mortality between the small proportion of men only registered in the Cancer Register and men registered in NPCR, indicating that information in NPCR can be generalized to all men with prostate cancer in Sweden.