A Population-Based Study on Myelodysplastic Syndromes in the Lazio Region (italy), Medical Miscoding and 11-Year Mortality Follow-Up: the Gruppo Romano-Laziale Mielodisplasie Experience of Retrospective Multicentric Registry.

Results on myelodysplastic syndromes (MDS) from population-based studies are rare and these data are infrequently collected by cancer registries because diagnostic difficulties and under-reported data. Our is the first regional Lazio study about medical coding, diagnosis, classification and mortality of MDS patients. This study is aimed at evaluating MDS medical miscoding and conducting a mortality follow-up in a cohort of 644 MDS patients enrolled in the Gruppo Romano-Laziale Mielodisplasie (GROM-L) registry from 2002 to 2010. We linked the MDS cohort with 2 regional health information systems: the Hospital Information System (HIS) and the regional Mortality Information System (MIS). About the first objective 92% of the patients had at most 12 hospitalization, but 28.5% of them had no hospitalization with the 238.7 ICD-9-CM. About the second objective we observed 45.5% of death during the follow-up, Myelodysplastic Syndrome was the second cause of death, other frequent causes of death were myeloid leukemia and aplastic anemia. This study highlights for the first time in Lazio that a disease like MDS, involving many resources for care assistance, tends to be under-documented in the HIS archive. This may be due to the evolution of the disease over the time, the inappropriate use of existing ICD-9-CM and the limitations of current ICD-9-CM classification. Moreover, the most frequent causes of death other than MDS might suggest a miscoding of MDS in the death causes too. In conclusion our registry could be a useful investigational tool to make a continued surveillance on medical miscoding and collect epidemiological data.