TY - JOUR
T1 - 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
AU - Mayer, Flavia
AU - Faglioni, Laura
AU - Agabiti, Nera
AU - Fenu, Susanna
AU - Buccisano, Francesco
AU - Latagliata, Roberto
AU - Ricci, Roberto
AU - Spiriti, Maria Antonietta Aloe
AU - Tatarelli, Caterina
AU - Breccia, Massimo
AU - Cimino, Giuseppe
AU - Fianchi, Luana
AU - Criscuolo, Marianna
AU - Gumenyuk, Svitlana
AU - Mancini, Stefano
AU - Maurillo, Luca
AU - Nobile, Carolina
AU - Niscola, Pasquale
AU - Piccioni, Anna Lina
AU - Tafuri, Agostino
AU - Trapè, Giulio
AU - Trape, Giulio
AU - Andriani, Alessandro
AU - De Fabritiis, Paolo
AU - Voso, Maria Teresa
AU - Davoli, Marina
AU - Zini Tanzi, Gina
PY - 2017
Y1 - 2017
N2 - Data on Myelodysplastic Syndromes (MDS) are difficult to collect by cancer registries because of the lack of reporting and the use of different classifications of the disease. In the Lazio Region, data from patients with a confirmed diagnosis of MDS, treated by a hematology center, have been collected since 2002 by the Gruppo Romano-Laziale Mielodisplasie (GROM-L) registry, the second MDS registry existing in Italy. This study aimed at evaluating MDS medical miscoding during hospitalizations, and patients' survival. For these purposes, we selected 644 MDS patients enrolled in the GROM-L registry. This cohort was linked with two regional health information systems: the Hospital Information System (HIS) and the Mortality Information System (MIS) in the 2002-2012 period. Of the 442 patients who were hospitalized at least once during the study period, 92% had up to 12 hospitalizations. 28.5% of patients had no hospitalization episodes scored like MDS, code 238.7 of the International Classification of Disease, Ninth Revision, Clinical Modification (ICD-9-CM). The rate of death during a median follow-up of 46 months (range 0.9-130) was 45.5%. Acute myeloid leukemia (AML) was the first cause of mortality, interestingly a relevant portion of deaths is due to cerebro-cardiovascular events and second tumors. This study highlights that MDS diagnosis and treatment, which require considerable healthcare resources, tend to be under-documented in the HIS archive. Thus we need to improve the HIS to better identify information on MDS hospitalizations and outcome. Moreover, we underline the importance of comorbidity in MDS patients' survival.
AB - Data on Myelodysplastic Syndromes (MDS) are difficult to collect by cancer registries because of the lack of reporting and the use of different classifications of the disease. In the Lazio Region, data from patients with a confirmed diagnosis of MDS, treated by a hematology center, have been collected since 2002 by the Gruppo Romano-Laziale Mielodisplasie (GROM-L) registry, the second MDS registry existing in Italy. This study aimed at evaluating MDS medical miscoding during hospitalizations, and patients' survival. For these purposes, we selected 644 MDS patients enrolled in the GROM-L registry. This cohort was linked with two regional health information systems: the Hospital Information System (HIS) and the Mortality Information System (MIS) in the 2002-2012 period. Of the 442 patients who were hospitalized at least once during the study period, 92% had up to 12 hospitalizations. 28.5% of patients had no hospitalization episodes scored like MDS, code 238.7 of the International Classification of Disease, Ninth Revision, Clinical Modification (ICD-9-CM). The rate of death during a median follow-up of 46 months (range 0.9-130) was 45.5%. Acute myeloid leukemia (AML) was the first cause of mortality, interestingly a relevant portion of deaths is due to cerebro-cardiovascular events and second tumors. This study highlights that MDS diagnosis and treatment, which require considerable healthcare resources, tend to be under-documented in the HIS archive. Thus we need to improve the HIS to better identify information on MDS hospitalizations and outcome. Moreover, we underline the importance of comorbidity in MDS patients' survival.
KW - Epidemiology
KW - Hematology
KW - Infectious Diseases
KW - Medical miscoding
KW - Myelodysplastic syndromes
KW - Epidemiology
KW - Hematology
KW - Infectious Diseases
KW - Medical miscoding
KW - Myelodysplastic syndromes
UR - http://hdl.handle.net/10807/119500
UR - http://www.mjhid.org/index.php/mjhid/article/download/2017.046/pdf
U2 - 10.4084/mjhid.2017.046
DO - 10.4084/mjhid.2017.046
M3 - Article
SN - 2035-3006
VL - 9
SP - e2017046-e2017046
JO - Mediterranean Journal of Hematology and Infectious Diseases
JF - Mediterranean Journal of Hematology and Infectious Diseases
ER -