Diagnosis of pervasive developmental disorders: when and how? An area-based study about health care providers.

BACKGROUND: Pervasive developmental disorders (PDDs) can be very difficult to diagnose in children and to communicate such a diagnosis to their parents. Families of children with PDD learn of their child's diagnosis long after the first symptoms are noted in the child's behavior. METHODS: An area-based survey was conducted to assess all social and health care providers taking care of patients with PDDs in the Veneto Region (North-East Italy). RESULTS: Only 28% of health care providers arrived at a definite diagnosis when the child was in his/her first year of age, 51% when the child was 2-3 years old and 21% from age of 4 years and up. On average, the latency between the time of the diagnosis and its communication to the family was 6.9 months. However, a number of families did not ever have a diagnosis communicated to them. Sometimes, 68% of the providers did not communicate a PDDs diagnosis to patient's families, and 4% of them quite commonly. CONCLUSION: The well-known delay in making a diagnosis of PDDs has two distinct components: one relating to the difficulty of confirming a diagnosis of PDDs, the other, hitherto unrecognized, relating to the family being notified.

Hospitalization of children with sickle cell disease in a region with increasing immigration rates.

Sickle cell disease (SCD) has become a paradigm of immigration hematology in Europe. Accurate up-to date information is needed to determine SCD prevalence, define real burden of disease and develop appropriate clinical networks of care, especially in regions lacking screening programs. We used two independent sources of data (Regional Register of Rare Disorders and Regional Register of Hospital Discharge Records) to determine extent of SCD and pattern of hospitalization of pediatric patients in the Veneto Region of NorthEast Italy. A steady increase of case notifications and hospitalizations has been observed in the past five years. Ninety-five percent of patients are immigrants with HbS/HbS SCD. Specialized regional registers can be used to define disease extent and guide targeted interventions in regions still lacking comprehensive care screening programs.

[How current data can guide mother-infant health planning. An insight into data sources and methodologies]. / Può l'informazione corrente orientare la programmazione per l'area materno-infantile? Fonti e metodi a confronto.

OBJECTIVES: To evaluate how Hospital Discharge Records (SDO) and Certificates of Delivery Care (CEDAP) can be utilized to determine the number of deliveries and births; to calculate indicators for monitoring mother-infant health status, the exposure to risk factors during pregnancy and the health care provided. DESIGN AND SETTING: CEDAP and SDO of all patients admitted to any hospital in the Veneto Region (4.7 million inhabitants, about 44,000 births) during the year 2003 were considered. An area-based study on deliveries and births, a retrospective cohort study on pregnancies, and a prospective cohort study on newborns up to the first year of age were performed to calculate health indicators. These indicators were compared to two official data sources: National Institute of Statistics (ISTAT) and Italian National Institute of Health (ISS). MAIN OUTCOME MEASURES: Descriptive indicators concerning mother-infant health status (conception, pregnancy, delivery, newborns and events during the first year of age). RESULTS: SDO provide highly accurate data on pregnancies, births and stillborns, which overlap with values reported by ISTAT Combining data from SDO and CEDAP with findings fom the process of tracking mothers and infants'cohorts, allows the calculation of many indicators on conception (n. 9), pregnancy (n. 8), delivery (n. 8), newborn (n. 15), and events during the first year of age (n. 6). In the Veneto Region the general fertility rate is 40.95% per hundred, with a relatively late mean age at delivery (32 years). Pregnant women undergoing prenatal invasive procedures are 23.5% and the caesarean section rate is 29%. Infants born to foreign mothers are 16%, whereas 2.5% are conceived through assisted reproduction techniques, 0.9% are very low birth weight, and 0.3% are extremely low birth weight; neonatal and infant mortality rates are 2.2% per hundred and 2.9% per hundred respectively. CONCLUSION: The proposed system is immediately feasible also at a local level, making reliable and informative data available to guide health policies.