Comparison of Cancer Diagnoses Between the US Solid Organ Transplant Registry and Linked Central Cancer Registries

Abstract

US transplant centers are required to report cancers in transplant recipients to the transplant network. The accuracy and completeness of these data, collected in the Scientific Registry of Transplant Recipients (SRTR), are unknown. We compared diagnoses in the SRTR and 15 linked cancer registries for colorectal, liver, lung, breast, prostate and kidney cancers; melanoma; and non-Hodgkin lymphoma (NHL). Among 187 384 transplants, 9323 cancers were documented in the SRTR or cancer registries. Only 36.8% of cancers were in both, with 47.5% and 15.7% of cases additionally documented solely in cancer registries or the SRTR, respectively. Agreement between the SRTR and cancer registries varied (kappa = 0.28 for liver cancer and kappa = 0.52-0.66 for lung, prostate, kidney, colorectum, and breast cancers). Upon evaluation, some NHLs documented only in cancer registries were identified in the SRTR as another type of posttransplant lymphoproliferative disorder. Some SRTR-only cases were explained by miscoding (colorectal cancer instead of anal cancer, metastases as lung or liver cancers) or missed matches with cancer registries, partly due to recipients' outmigration from catchment areas. Estimated sensitivity for identifying cancer was 52.5% for the SRTR and 84.3% for cancer registries. In conclusion, SRTR cancer data are substantially incomplete, limiting their usefulness for surveillance and research.

Keywords: Organ Procurement and Transplantation Network (OPTN); cancer/malignancy/neoplasia; clinical research/practice; health services and outcomes research; hematology/oncology.

Figure 1

Evaluation of cancer diagnoses in the SRTR and cancer registries. Reading from top to bottom, the figure describes the number of cancer registry-only cases (N=4431 total cases) and SRTR-only cases (N=1465 total cases) that were determined to be in each category. A subset of cancer registry-only and SRTR-only cases were reviewed by staff at eight cancer registries. A total of 3427 cancer cases were documented in both the SRTR and cancer registries. SRTR, Scientific Registry of Transplant Recipients.